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Letters

2015 Australasian Students’ Surgical Conference research presentations

The Australasian Students’ Surgical Conference (ASSC) is the leading surgical conference for medical students in Australia and New Zealand. ASSC is designed to coincide yearly with the RACS Annual Scientific Conference and was held this year in Perth, Western Australia from 1-3 May 2015.

Organised each year by medical students, in 2015 it provided 250 delegates with a unique opportunity to be educated about, and inspired to pursue, a surgical career through a program of keynote addresses, research presentations and a full day of skills based workshops.

The ASSC committee encourages fellow medical students to develop and challenge themselves professionally. This is a major objective of ASSC, as reflected throughout our entire program. This year, in collaboration with the Australian Medical Student Journal (AMSJ), the winning abstract has been offered publication.

We received an overwhelming response to our call for abstracts, with many outstanding submissions. Abstracts were de-identified, checked for eligibility criteria, and the format standardised prior to consideration by our panel and being offered a podium presentation. Congratulations to our research prize winners:

  • Best Research Presentation – Cameron Iain Wells, University of Auckland
  • Runner up Research Presentation – Damian James Ianno, University of Melbourne
  • Best Poster Display – Omar Khan Bangash, University of Western Australia

With such a phenomenal response, the 2015 ASSC committee is delighted for other participants to also have their research presented in the AMSJ.

The ASSC committee look forward to seeing you at the next ASSC!

Please download the pdf to read the research presentions.

Categories
Feature Articles

Cervical screening in Indigenous populations: Revisiting possibilities for selfcollection technique

Detection and triage of cervical cancer has undergone commendable advances since the introduction of the Papanicolaou (Pap) smear, Human Papilloma Virus (HPV) detection, and recent implementation of the HPV vaccine. Many Australian females have benefited from these public health advances, however as with many other health trends in Australia, the Indigenous population appears to be lagging behind. This article reviews cervical cancer incidence and mortality as well as its public health management in the Indigenous context. It also reiterates clear issues in the medical record system for identifying Indigenous status in screening and addresses the reasons for disparities in these health trends. In reintroducing the idea of self-collection techniques in the Indigenous context, it is hoped that its ability to overcome privacy and cultural issues associated with traditional Pap smear collection methods and its potential to benefit Indigenous uptake of cervical screening is highlighted. These benefits could be extended to all women who remain averse to the idea of traditional Pap smear collection procedure. This article also explores the possibility of developing a screening method involving the combination of tampon self-collection with ThinPrep and Hybrid Capture II DNA assay technology.

 Cervical cancer screening and prevention in the Indigenous context50

Cancer is a growing health issue for Indigenous populations in Australia and it is now being listed alongside cardiovascular disease as a focus for national health strategies to improve Indigenous health. [1] Despite recent trends of decreases in incidence and mortality for cervical cancer in the general population, Indigenous women suffer from higher rates of incidence (21.4 vs. 8.6 per 100,000) and mortality (9.0 vs. 1.9 per 100,000) according to the most recent report on cervical screening from the Australian Institute of Health and Welfare. [1] Reports suggest that Indigenous women also suffer from later detection of cervical cancers, with positive Pap smears on average showing more advanced cellular atypia. [2] It is suggested that incidence and mortality from cervical cancer is highly related to the frequency of screening undergone by the patient. [3] Hence, it is arguable that the best way to address the disparity in cervical cancer between Indigenous and non-Indigenous populations is to encourage screening uptake by Indigenous women.

Participation of Indigenous women in preventative measures regarding cervical cancer (Pap smears and HPV vaccine) is hard to quantify. One difficulty is that Indigenous status is not a mandatory field on pathology requisitions for Pap smears. [4,5] As a result, state and territory registers do not have reliable information to quantify the number of Indigenous women participating in screening programs. [4,6] Data taken from individual Indigenous health services and communities estimate the number of Indigenous women in those communities undergoing Pap smears ranges from 27-63% [4] with other studies report an increasing trend of women in the Northern Territory participating in cervical screening since 1999. [2] Other data has shown positive results for vaccine uptake amongst Indigenous Queensland adolescents in school-based programs as part of the national vaccination strategy. [7] This will benefit future generations of Indigenous women in regards to cervical cancer prevention. However, in considering health prevention strategies that more directly influence immediate cancer rates in Indigenous populations, it is arguably more important to consider the cervical cancer screening issues in women who did not receive the HPV vaccine in their adolescence.

The aforementioned health trends are attributed to complex and multifaceted explanations. Risk factors contributing to higher cervical cancer burden for Indigenous women reportedly may be related to health behaviours (e.g. smoking), other co-morbidities (e.g. diabetes), and sexually transmitted infection. [8] However, in terms of cervical cancer screening, reluctance to either participate in cancer screening, or return for follow up of abnormal results is an especially large contributor to the burden of disease. [9] Cultural barriers between the Indigenous community and the health system are also likely to be heavy contributors. A study of Indigenous women found that they have fearful and fatalistic attitudes toward cancer [9] and there is a heavy social stigma surrounding the topic of cervical cancer as it is a ‘dirty disease’. In fact, other gynecological problems are often ignored as they are associated with a sense of shame. [9]

When considering the prominent cultural barriers for Indigenous women, it can be proposed that the participation in screening amongst this demographic could be improved by implementing more culturally respectful methods of testing, health promotion, and education in communities to encourage uptake of screening methods. The latter part of this solution has been quite effectively implemented in certain areas of Australia through the efficient use of Aboriginal healthcare workers in collaboration with other government public health initiatives. [10] However, it appears we are still strongly limited by the screening technique itself. The most reasonable solution to avoiding the issue of physician-associated collection and invasion of personal privacy for Indigenous women (as with all women) lies in the development of a self-collection protocol. This avenue has been explored in the past by different studies with varying results; but in light of newly developing technology, now may be the time for re-examination.

Methods of self-collection technique

There are many possible methods of self-collection currently being explored, including tampons, dry swabs, and brushes. These aim to pick up sloughed off cervical cells in the vaginal canal for review.  A study by Budge et al. has explored the possibility of a tampon ‘self-collection’ technique to gather cervical cells for pathological review in place of the traditional Pap smear protocol. However, as identified by this study, an inherent problem with the efficacy of using tampon collection technique is that adequate collection of cells for review relies heavily on correct positioning of the tampon within the vaginal canal. [11] Harper et al. have contributed to the development of tampon collection by observing correlations between increased cervicovaginal exposure time and increased efficacy of the self-collection technique, finding comparable efficacy with traditional swab collection techniques. [12] Another study that looked at the efficacy of dry swab collection techniques, similar to tampon collection, observed that it was lacking in ability to pick up endocervical cells for cytological review. [13] It was also found that though self-collected samples provided comparable cytology concordance with physician-collected samples, its low sensitivity and negative predictive value prevents its use as a primary screening tool. [13] Hence there has been a movement to combine self-collection with other innovations to improve its viability as a screening tool for cervical cancer. The study by Budge et al. combined the use of tampon self-collection with ThinPrep technology to preserve the viable cells collected, the efficacy of which is discussed below.

ThinPrep

ThinPrep is proposed to help preserve accuracy where transport and storage issues may otherwise affect sensitivity of testing in a rural setting. [11] ThinPrep is characterized by the usual technique of collection of cells of the transitional zone of the cervix with a brush and the sample is then immediately immersed in a fixating agent to be delivered to a laboratory. [14] The mixture is then centrifuged, filtered, and processed to a mono-layered sample for histological analysis. [14] This method of preparation is said to provide a more easily-analysed sample, free of obscuring factors such as blood and mucous, overlapping cells or air-drying artefacts. [14] As a result, it has been concluded that ThinPrep does have the potential to increase sensitivity of testing if used correctly compared with conventional Pap smear methods. [15] However, Michael et al. suggests the ThinPrep method is not completely fault-proof. There have been cellular changes reported in ThinPrep samples compared to conventional smears. [16] Those cellular changes included smaller appearing cells, and nucleolar and cytoplasmic changes. Despite this, Michael et al. does note that general features of malignancies such as nuclear pleomorphism and membrane irregularities are well-preserved. [16] Currently, it appears that ThinPrep is only approved for use with traditional cervical cell collection methods. The use of ThinPrep with tampon collection remains a research initiative that has definite potential. If further research is conducted to support the efficacy of ThinPrep in better preserving collected samples we may have a very effective means of reducing disparities in quality of service to not only Indigenous, but all rurally located women in Australia.

Hybrid capture collection

Development of Hybrid Capture II (HC2) DNA testing assay sheds light on the possibility of using HPV DNA testing of cervicovaginal samples as new means of triage for the need to screen with cytological review. Putting this into practice would require facilitating the self-collection of samples and analysing them for infection with particular HPV subtypes, for example the HPV genotypes 16 and 18 which are the most strongly associated with development of cervical cancer. [17] Depending on the type of infection, further cytological analysis may be prompted, involving a traditional physician-collected Pap smear (in the absence of a self-collected specimen adequate for cytological review). Incorporating this step of ‘pre-screening’ may encourage women to become more receptive to making contact with the screening process.

Igidbashian et al. have tested the efficacy of combining the self-collection technique and the HC2 assay for detection of cervical cancer risk compared with traditional Pap smears. Their study shows that incorporation of HC2 allows increased sensitivity in detection of HPV infection compared with cytological review. [18] However, it also demonstrated detection of transient HPV infections which may not be relevant for the detection of cervical neoplasia. [18] Despite this, the study does allude to the ability of HPV testing to separate women into high risk and low risk groups of developing of cervical intraepithelial neoplasia (CIN). [18] This is supported by the work of Bulkman et al. which approves of the use of HC2 testing to allow earlier detection of more potentially severe lesions. [19] Cochrane Collaboration has not yet reviewed this matter in particular; but does provide some support for the use of HPV DNA testing via HC2 assay over repeat cytological review in the triage of women with minor cervical cell changes present on an initial cytological review. [21] The prognostic value of HPV testing for cervical carcinomas is also recognised in a study by Lai et al. which notes an association between HPV 18 infection and poorer prognosis of cervical cancer. [22]

There is insufficient research to support or refute the use of HPV DNA testing as a ‘pre-cytological screening’ tool; but it is arguably a worthwhile avenue of research given the current inclusion of HPV DNA testing in many guidelines. Furthermore, there is evidence to support the comparable efficacy of self-collected samples versus physician-collected samples in HPV infection detection as opposed to cytological analysis. [23] Incorporation of HPV DNA testing may power the possibility of self-collection techniques. The use of this in screening methods for cervical cancer has great potential to overcome many of the privacy issues surrounding a physician-conducted cervical swab in conservawomen.

Acceptability of self-collection techniques

Positive results regarding the acceptability of self-collection techniques has been demonstrated by Guan et al. in a study amongst a rural Chinese population [24], whose culture may have conservative elements similar to that seen in the Indigenous women of Australia. The study also suggests that self-collection techniques may be a promising alternative to traditional specimen collection in rural areas where there may be a lack of trained medical practitioners. [24] This idea is supported by findings of Budge et al. in observing many women voiced their approval that the tampon-collection technique was ‘less embarrassing’ and gave them ‘more control over [their] own health’. [11] Both these factors are pertinent indications for the value of developing and using self-collection techniques amongst Indigenous women. However, despite such promising research, previous systematic reviews of self-collection technique suggest there is still insufficient evidence to support their clinical use in place of the traditional methods  This would suggest it may be worthwhile for further research to be invested in this area – the combination of self-collection with ThinPrep and HC2 may be the answer to improving screening rates in rurally located Indigenous women.

Conclusion

Despite successes of previously implemented prevention strategies for cervical cancer in Australia; it is clear that once again, the Indigenous population is lagging behind, with Indigenous women suffering from a greater burden of disease due to cervical cancer compared to non-Indigenous women. This could be attributed to their lower access or uptake of the only current widely available and approved tool: Pap smears. The issues of invasiveness and breach of privacy surrounding Pap smear practice itself stands as a significant barrier between Indigenous women and their uptake of cervical cancer screening. Addressing the possible alternatives to traditional Pap smear collection may be pertinent to successfully overcoming particular cultural barriers to cervical screening. Concepts of tampon-collection technique, incorporation of ThinPrep and Hybrid Capture II assay technology all pose potential improvements in the area of self-collection methods. Successful development of a combined technique with appropriate health promotion could make incredible differences in uptake of cervical screening amongst all the generations of Indigenous women who missed out or may miss out on the HPV vaccine. It may also be helpful to make modifications to the records process for screening tests to mandatorily include Indigenous status of women to gain more reliable data.

Acknowledgements

None.

Conflict of interest

None declared.

Correspondence

D Quach: 93dquach@gmail.com

References :

[1] Prior D. The meaning of cancer for Australian Aboriginal women; changing the focus of cancer nursing. Eur J Oncol Nurs. Sep 2009 [cited 2014 April 26]; 13(4):280-286.

[2] Welfare AIoHa. AIHW Cervical Screening 2010-2011: data report. Canberra, Australia: Australian Institute of Health and Welfare 2013. [cited 2014 April 26].

[3] Condon JR, Armstrong BK, Barnes T, Zhao Y. Cancer incidence and survival for Indigenous Australians in the Northern Territory. Aust N Z J Public Health. Apr 2005 [cited 2014 April 26]; 29(2):123-128

[4] Wharton C, Rowlands L, Gertig D. Where are we today with cervical cancer in Australia? Cancer Firum. 2008 [cited 2014 April 26]; 32(2):76-80

[5] Condon JR, Armstrong BK, Barnes A et al. Cancer in Indigenous Australians: A Review. Cancer Causes and Control. 2003 [cited 2014 April 26]; 14: 109-121.

[6] Gertig DM, Brotherton JM, Saville M. Measuring human papillomavirus (HPV) vaccination coverage and the role of the National HPV Vaccination Program Register, Australia. Sexual Health. Jun 2011 [cited 2014 April 26] 8(2):171-178.

[7] Binns PL, Condon JR. Participation in cervical screening by Indigenous women in the Northern Territory: a longitudinal study. Med J Aust. Nov 6 2006. [cited 2014 April 26];185(9):490-494

[8] Smith MA, Canfell K, Brotherton JM, Lew JB, Barnabas RV. The predicted impact of vaccination on human papillomavirus infections in Australia. Int J Cancer. Oct 15 2008 [cited 2014 April 26]; 123(8):1854-1863.

[9] Shannon GD, Franco OH, Powles J, et al. Cervical cancer in Indigenous women: The case of Australia. Maturitas. Nov 2011 [cited 2014 April 26]; 70(3):234-245.

[10] Clarke S, Pierce R. Aboriginal Well Women’s Screening Program: A Culturally Sensitive Approach to Aboriginal Women’s Health. South Australia

[11] Budge M, Halford J, Haran M, Mein J, Wright G. Comparison of a self-administered tampon ThinPrep test with conventional pap smears for cervical cytology. Aust N Z J Obstet Gynaecol. Jun 2005 [cited 2014 April 26]; 45(3):215-219.

[12] Harper DM, Hildeshein A, Cobb JL et al. Collection Devices for Human Papillomavirus. Journal of Family Practice. 1999 [cited 2014 April 26]; 48(7): 531-535.

[13] Garcia F. Cross-sectional study of patient- and physician-collected cervical cytology and human papillomavirus. Obstetrics & Gynecology. 2003;[cited April 2 2015]; 102(2):266-72.

[14] Abulafia O, Pezzullo JC, Sherer DM. Performance of ThinPrep liquid-based cervical cytology in comparison with conventionally prepared Papanicolaou smears: a quantitative survey. Gynecol Oncol. Jul 2003 [cited 2014 April 26]; 90(1): 137-144..

[15] Stein SR. ThinPrep versus the conventional Papnicolaou test: a review of specimen adequacy, sensitivity, and cost-effectiveness. Primary Care Update for OB/GYNS. 2003 [cited 2014 April 25]; 10(6): 310-313

[16] Michael CW, Hunter B. Interpretation of Fine-Needle Aspirates Processed by the ThinPrep Technique: Cytologic Artifacts and Diagnostic Pitfalls Diagn Cytopathol. Jul 2000 [cited 2014 April 26];23(1):6-13.

[17] Brotherton JM. How much cervical cancer in Australia is vaccine preventable? A meta-analysis. Vaccine. 2007 [cited 2014 April 26]; 26: 250-256.

[18] Igidbashian S, Boveri S, Radice D et al. Performance of self-sampled HPV test in comparison with liquid based cytology. European Journal of Obstetrics & Gynecology and Reproductive Biology. Forthcoming 2014 [cited 2014 April 26]

[19] Bulkmans NW, Berkhof J, Rozendaal L, et al. Human papillomavirus DNA testing for the detection of cervical intraepithelial neoplasia grade 3 cancer: 5-year follow-up of a randomised controlled implementation trial. Lancet. Nov 24 2007 [cited 2014 April 26]; 370(9601):1764-1772.

[20] Wright TC Jr, Denny L, Kuhn L et al. HPV DNA testing of self collected vaginal samples compared with cytological screening to detect cervical cancer. Journal of American Medical Association. 2000 [cited 2014 April 26]; 283(1): 81-86.

[21] Arbyn M, Roelens J, Simoens C, et al. Human Papillomavirus testing versus repeat cytology for triage of minor cytological cervical lesions Cochrane Database Syst Rev. 2013 [cited 2014 April 6]; 3:CD008054.

[22] Lai CH, Chang CJ, Huang HJ, et al. Role of Human Papillomavirus Genotype in Prognosis of Early-Stage Cervical Cancer Undergoing Primary Surgery. J Clin Oncol. Aug 20 2007 [cited 2014 April 26]; 25(24):3628-3634.

[23] Haguenoer K, Giraudeau B, Gaudy-Graffin C, de Pinieux I, Dubois F, Trignol-Viguier N, et al. Accuracy of dry vaginal self-sampling for detecting high-risk human papillomavirus infection in cervical cancer screening: a cross-sectional study. Gynecol Oncol. 2014; [cited April 2 2015]; 134(2):302-8.

[24] Guan YY, Castle PE, Wang S et al. A cross-sectional study on the acceptability of self-collection for HPV testing among women in rural China. Sexually Transmitted Infection. May 29 2012[cited 2014 April 26]; 88(7):490-494.

[25] Stewart DE, Gagliardi A, Johnston M et al. Self-Collected Samples for Testing of Oncogenic Human Papillomavirus: A Systematic Review. J Obstet Gynaecol Can. Oct 2007 [cited 2014 April 26]; 29(10): 817-828.

Categories
Feature Articles

The magic number: The case for a 21-year-old minimum drinking age in Australia

The United States is unique among Western countries in setting the minimum legal drinking age at 21 years. The choice of 21 was largely driven by a powerful road-safety lobby group in the 1980s; however a wealth of clinical and epidemiological evidence has subsequently emerged in its favour. A highly-publicised article in the Medical Journal of Australia [1] recently proposed raising the Australian minimum drinking age from 18 to 21, citing both sociological and neurodevelopment arguments.  This essay reviews the three conditions that should be satisfied for such a legislative change to occur, and proposes an alternate license-based model for age regulation as a thought experiment.

Age-21 Laws in the 21st Century49

When prohibition ended in the United States in 1933 with the 21st Amendment, states were given autonomy to set their own alcohol regulations. This included the minimum legal drinking age. The commonest age chosen was 21 years (in 32 states), followed by 18 years (13 states), 20 years (3 states), and 16 years (in Ohio). [2] 21 was likely favoured because, at the time, this was the age of majority in most US states – the age when an individual was legally considered an adult, the age when they could vote in state elections. [3]

Forty years later, in the midst of the Vietnam War, the issue of drinking age emerged once again into the spotlight. A public campaign argued that it was nonsensical for a man to be conscripted to the army, be sent abroad to fight and die for his country, and yet not legally be permitted to have a drink. One by one, under strong public pressure, the states lowered the drinking age to 18 years. [3] This coincided with changes in the age of majority at a federal level. The 26th Amendment of 1971 gave 18-20 year-olds the right to vote in the United States – 18 years became the age of adulthood.

However, while voting rights persisted for 18-year-olds, this lowered drinking age lasted but one generation. In 1984, the Reagan administration passed the National Minimum Drinking Age Act, which raised the legal drinking age to 21 again. [4] To expedite the change, the federal government threatened significant infrastructure cuts to any states that did not comply. By 1988, alcohol was banned for under-21s in all 50 states and territories across America. Even Ohio.

The strongest lobby group in support of this raised drinking age was “Mothers Against Drunk Driving” (MADD) – a not-for-profit organisation run by mothers of the victims of alcohol-fuelled driving accidents, many of whom were under the age of 21. [5] MADD claims that this legislation has saved over 25,000 lives since 1988, purely from traffic-related morbidity. [6] Subsequent evidence has confirmed that a 21-year old drinking age has benefits far beyond road safety, reducing the incidence of alcohol dependence [7], alcohol-related violence [8], suicide [9], and risky sexual behaviours amongst youth. [10] More recent neurodevelopmental evidence has bolstered the case, demonstrating that alcohol exposure impairs neuronal maturation in under-21s. [11] Consequently, the US persists in this awkward legislative balance where individuals can vote, drive and enlist in the army at 18, but cannot yet purchase a beer.

This is not unique from an international perspective in that 6 other nations have a 21-year minimum drinking age: Sri Lanka, Indonesia, Kazakhstan, Oman, Pakistan and Palau. [12] In all these cases, the choice of 21 was driven far more by cultural and religious factors than epidemiological evidence. The closest other OECD nation is Japan, with a drinking age of 20. The vast majority of countries have chosen 18 years, in line with the standard age of legal majority. Switzerland, Belgium, Austria, Germany, and the Netherlands have all chosen an age of 16.

Advance Australia where?

Although it is clearly not the mainstream position internationally, public support is growing for a 21 year minimum drinking age in Australia. In 2010, 50.2% of respondents supported such a change, compared to 40.7% in 2004. [13] In a 2014 article in the Medical Journal of Australia, Toumbourou et al. elegantly assembled the case for a 21-year threshold [1]. The article gained significant media attention in May 2014, catapulting the issue of drinking age into the spotlight – not for reasons of youth enfranchisement (as in the Vietnam era), not for reasons of road safety, but with a comprehensive clinical and epidemiological argument behind it. The National Alliance for Action on Alcohol and the Australian Medical Association have added weight to this “age-21” campaign. But is this a realistic option for Australia? In the delicate balancing act between theoretical goals and practical realities, what age is the magic number? Is a single age too simple?

The burden of proof

Any case for age-21 legislation in Australia should demonstrate three key points:

  • That alcohol consumption at 18-21 years causes significant negative outcomes
  • That age-21 regulations are effective at reducing the alcohol intake of under-21s
  • That the benefit of alcohol restriction outweighs the value of preserving 18-21 year olds’ autonomy

The reason point (iii) is necessary is that points (i) and (ii) are likely true for all age groups: restricting alcohol purchase would presumably reduce alcohol consumption and therefore alcohol-related complications irrespective of age. As a society, we have made a policy decision to tolerate alcohol use despite its associated risks in the interests of public autonomy. So the real question here is whether under-21s are disproportionately affected by alcohol-related risks to the point that this autonomy should be overridden and all consumption legally forbidden. Is the 18-21 age group really so vulnerable?

Condition 1 – An age of vulnerability

There is accumulating evidence to suggest that 18-21 year olds are a population at extreme risk from alcohol-related complications based on neurodevelopmental, road-safety, and behavioural data.

1.Neurodevelopmental

Cross-sectional studies have shown that alcohol consumption during adolescence is associated with short- and long-term cognitive impairment, including deficits in information processing, memory, attention and executive function. [11, 14] This is especially true for binge drinking behaviours. [15] Structurally, there appears to be impaired white matter development in the prefrontal cortex and fronto-striatal circuitry, which has been demonstrated with CT [16], fMRI [17] and post-mortem data. [18] However, some critics have argued that these neurobiological variations may be pre-existing features that predispose individuals to alcohol experimentation, rather than the consequence of alcohol abuse. For example, in a recent review article Clark et al. [19] suggest that studies have not sufficiently controlled for confounding psychological variables, such as attention deficits and disruptive behaviours, which are known to be associated with early alcohol experimentation. To clarify the causal links, further longitudinal data is required assessing the baseline neurobiological status of adolescents before their first alcohol exposure.

2. Road Safety

A 2001 meta-analysis of 9 population studies found that raising the minimum legal drinking age from 18 to 21 caused a 12% reduction in overall road-related mortality. [20] This aligns with the data collected by MADD and the National Highway Safety Administration in the United States [6]. However, the question arises whether these improvements in road safety are age-specific. Would raising the drinking age to 25 also cause a 10% drop in accidents among 21-24 year-olds? The argument is that 18-21 year-old drivers are the least experienced, the least responsible, and therefore the most vulnerable to alcohol. However, there is a lack of rigorous data to demonstrate age-specificity. The legal alcohol limits for driving in Australia are somewhat age-dependent, with L- and P- drivers having a zero blood-alcohol tolerance, compared to 0.05% for full-licensees. Does a differential blood alcohol threshold provide adequate protection to account for the clear difference in risk profile between adolescents and older drivers? [21]

3. Risk behaviours

Beyond road-related accidents, there is strong evidence to suggest a broader correlation between alcohol use and risky behaviours. A survey of Australian 17-19 year olds on “Schoolies” showed that 64% had consumed more than 10 drinks on a single occasion, and 18% displayed risky sexual behaviours. [22] A survey of almost 9000 American adolescents 12-21 showed a striking correlation between alcohol excess and physical violence [23]; while Miller et al. argue that early alcohol consumption, especially in the form of binge drinking, may be a precursor of other illicit drug use. [24] Many studies also demonstrate a link between alcohol excess and suicidal behaviours in adolescents, however the causal direction has not been well characterised. [25] These are compelling arguments that demonstrate not only a deleterious effect of alcohol, but also a clear correlation between minimum age legislation and outcome data.

Condition 2 – The power of the law

Despite certain experimental shortfalls, the overarching trend across neurodevelopmental, road safety and behavioural data seems to support this notion of 18-21 year-olds being particularly vulnerable to alcohol. If we accept this to be true, then the second key burden of proof relates to whether an elevated age gap actually does translate into a reduction in early-age alcohol consumption. Some critics argue that higher age restrictions in fact drive alcohol use underground and lead to more dangerous patterns of consumption. [26] In other words, age-21 laws do not allow adolescents to learn safe drinking practices within a family context, instead forcing them to experiment independently, albeit at a later age. However, the data from large-scale European studies comparing adolescent drinking behaviours in the EU and US strongly suggest otherwise. The European School Survey Project on Alcohol and Other Drugs (ESPAD) found that a greater proportion of 10th-graders in Europe had consumed alcohol within the past 30 days (33% in the US versus 80% in Denmark, 75% in Germany, 64% in France). [26] Furthermore, a higher percentage had been intoxicated before age 13 (8% in the US versus 25% in Denmark, 14% in Germany, 9% in France). Of course, it is difficult to disentangle the effect of legislation in each of these countries from the influence of culture and tradition. However, on the surface it would appear that countries with lower drinking age consistently show earlier exposure to alcohol in adolescence.

New Zealand data have demonstrated that youth several years below the legal drinking age invariably gain access to alcoholic products through older friend circles and siblings [27] – a phenomenon that Tambourou et al. refer to as the “trickle-down” effect. [1] Evidence suggests that an upward shift in the legal drinking age not only reduces the number of 18-21 year olds consuming alcohol, but also significantly reduces the likelihood of 15-18 year olds acquiring it. In summary, the evidence supports the hypothesis that legal restrictions do translate into community practice.

Condition 3: A balancing act

Having satisfied the first two conditions, we arrive at the third and most challenging question: does the negative impact of alcohol amongst under-21s outweigh their personal autonomy as legal adults? Tangled up with this argument is the deeply-ingrained cultural idea that alcohol consumption is a mark of adulthood, a rite of passage. By instituting age-21 laws, the state would not only be removing personal autonomy, but also stamping out cultural aspects of the coming-of-age tradition. Is this fair, is it necessary, is it overly paternalistic? There is some evidence to suggest that raising the minimum legal drinking age causes a ‘reactance phenomenon’ where underage individuals drink more in response to the imposed restrictions. [28] However a large meta-analysis by Wagenaar et al. disputes this finding, demonstrating amongst 33 studies from 1960-2000 a strong inverse relationship between minimum drinking age and alcohol consumption rates. [29]

In spite of these data, there remains the fundamental philosophical issue of whether it is equitable to impose a blanket regulation across all under-21s when the negative statistics are driven by a small minority of excessive alcohol drinkers? Ultimately, these are questions of political philosophy more than clinical data – to what extent should the state protect individuals from themselves? There are no easy answers. This is a situation where public opinion must shape government policy.

An individualised system

One key problem is that public policy cannot take into account the diversity of the target population – with 18-21 year olds varying significantly in maturity, family support, and risk-taking behaviour. Given this variability, one might consider a system where alcohol regulations are personally tailored. As a thought experiment, consider the possibility of “alcohol licenses” for individuals. An 18-year-old might be required to pass a written examination on content similar to the current Responsible Service of Alcohol syllabus. There could be a point system, with points lost and licenses potentially revoked for alcohol-related misdemeanours. Perhaps even a provisional license system (like L- and P-plates) restricting the type and quantity of alcohol that could be purchased by youth. This would require a large bureaucratic infrastructure to support it; however it may be one option for creating a smoother pathway from adolescence into responsible alcohol use.

Conclusions

Toumbourou et al. conclude their article with a call-to-action for a multi-level advocacy campaign in support of age-21 regulations. [1] However, perhaps the real value is in the dialogue more than the outcome. Ultimately, drinking age is an arbitrary number that does not perfectly match the maturity levels of all individuals and certainly does not perfectly translate into alcohol consumption patterns. The important point is that society becomes aware of the risk of premature alcohol use, and that this knowledge becomes integrated into family education, peer dynamics, and youth culture. The real goal should be for adolescents to approach alcohol in a mature and sensible fashion. Regardless of where the Australian law ultimately settles, perhaps it takes a high-profile legislative debate in order to bring this conversation into the spotlight.

Acknowledgements

None.

Conflict of interest

None declared.

Correspondence

M Seneviratne: msen5354@uni.sydney.edu.au

References

[1] Toumbourou J, Jones S, Hickie B. Should the legal age for alcohol purchase be raised to 21? Med J Aust, 2014;200(10):568-70.

[2] Miron J, Tetelbaum E. Does the minimum legal drinking age save lives? Economic Inquiry 2009;47(2):317-36.

[3] The law relating to age of majority, the age of marriage and some connected subjects, in Working Paper No. 2. 1977, The Law Reform Commission.

[4] LegalFlip. Why is the Legal Drinking Age 21 in the United States? 2014; Available from: http://www.legalflip.com/Article.aspx?id=20&pageid=84.

[5] DeJong W, Blanchette J. Case closed: research evidence on the positive public health impact of the age 21 minimum legal drinking age in the United States. J Stud Alcohol  Drugs, 2014;Suppl 17:108-15.

[6] Lives saved in 2008 by restraint use and minimum drinking age laws – in National Highway Traffic Safety Administration. June 2009.

[7] Dawson DA, Goldstein RB, Chou SP, RuanW J, Grant BF. Age at first drink and the fi rst incidence of adult-onset DSM-IV alcohol use disorders. Alcoholism: Clin Exp Res 2008;322:149-60.

[8] Hingson R, Heeren T, Zakocs R. Age of drinking onset and involvement in physical fights after drinking. Pediatrics, 2001;108:872-77.

[9] Birckmayer J, Hemenway D. Minimum-age drinking laws and youth suicide, 1970-1990. Am J Public Health Res, 1999;89:1365-68.

[10] Hingson R, Heeren T, Winter MR, Wechsler H. Early age of first drunkenness as a factor in college students’ unplanned and unprotected sex attributable to drinking. Pediatrics, 2003;111:34-41.

[11] Squeglia L, Jacobus J, Tapert SF. The Influence of Substance Use on Adolescent Brain Development. Clin EEG Neurosci, 2009;40(1):31-38.

[12] Hanson GR, Venturelli PJ, Fleckenstein AE. Current statistics and trends in alcohol consumption, in Drugs and Society. 2015, Jones & Bartlett Publishing.

[13] National Drug Strategy Household Survey report, in AIHW Cat. No. PHE 145. 2010, Australian Institute of Health and Welfare.

[14] Hermens D, Lagopoulos J, Tobias-Webb J. Pathways to alcohol-induced brain impairment in young people: a review. Cortex, 2013;49:3-17.

[15] Carlen PL, Fornazzari L, Bennett J, Wikinson DA. Computerized tomographic scan assessment of alcoholic brain damage and its potential reversibility. Alcohol Clin Exp Res 1986;10:226-32.

[16] Agartz I BS, Hamma FJ, Svinhufvud K. Volumetry during acute alcohol withdrawal and abstinence: a descriptive study. Alcohol, 2003;38:71-78.

[17] Krill J, Halliday GM, Svoboda MD, Cartwright H. The cerebral cortex is damaged in chronic alcoholics. Neuroscience, 1997;73:993-98.

[18] Clark DB, Thatcher DL, Tapert SF. Alcohol, psychological dysregulation, and adolescent brain development. Alcoholism: Clin Exp Res, 2008; 32(3):375-385.

[19] Shults R, Elder RW, Sleet DA. Reviews of evidence regarding interventions to reduce alcohol-impaired driving. Am J Prev Med, 2001;21(4)Suppl 1:66-88.

[20] Jonah BA, Dawson NE. Youth and risk: age differences in risky driving, risk perception, and risk utility. Alcohol Drugs and Driving, 1987;3(3):13-29.

[21] Jones S BL, Robinson L. The schoolies experience: the role of expectancies, gender roles and social norms of recent school leavers. Wollongong, NSW: Centre for Health Initiatives, University of Wollongong, 2011.

[22] Swahn MH. Alcohol-consumption behaviors and risk for physical fighting and injuries among adolescent drinkers. Addictive Behaviors, 2004;29(5):959-963.

[23] Miller JW. .Binge drinking and associated health risk behaviors among high school students Pediatrics, 2007;119(1):76-85.

[24] Hallfors DD. Adolescent depression and suicide risk. Am J Prev Med, 2007;27(3):224-231.

[25]    Friese B, Grube JW. Youth drinking rates and problems: a comparison of European countries and the United States Prevention Research Center – Pacific Institute for Research and Evaluation.

[26] Kypri K, Dean J, Kirby S. ‘Think before you buy under-18s drink’: evaluation of a community alcohol intervention. Drug Alcohol Rev, 2004;24:13-20.

[27] Allen DN, Sprenkel DG, Vitale PA. Reactance theory and alcohol consumption laws: further confirmation among collegiate alcohol consumers. J Stud Alcohol, 1994; 55(1).55-67

[28] Wagenaar AC,Toomey TL. Effects of minimum drinking age laws: review and analyses of the literature from 1960 to 2000. J Stud Alcohol Suppl, 2002;(14):206-25.

Categories
Feature Articles

Clinical implications of the sex and gender differences associated with substance use disorders

Substance use disorders are exceedingly complex management issues which result in significant medical and social consequences. Epidemiological studies in the United States and Australia show that more men than women are affected by substance use disorders. However, there is evidence to suggest that women have distinctly different and potentially more hazardous patterns of substance use. These include: a greater tendency to escalate usage, relatively higher rates of relapse, and the telescoping phenomenon (which results in a more rapid progression from the initiation of substance use to drug dependence and adverse medical consequences). Proposed mechanisms for the variable impact of substance use disorders on men and women include biological and gender-based theories which incorporate environmental, psychological and social factors. Studies attribute the biological differences to direct and indirect oestrogen-mediated mechanisms, and the influence of dopamine on structures in the brain including the nucleus accumbens and striatal pathways. Psychosocial variables include psychiatric co-morbidities, family responsibilities, financial issues and perceptions of stigma. The differences in the progression and outcomes of substance use disorders between men and women pose the question as to whether their management can be enhanced by a gender-specific approach. This article outlines the various treatment facilities available in Australia and explores the types of facilities that women tend to use. Gender-specific programs and/or facilities have been shown to be most useful when they support sub-populations of women such as pregnant mothers, mothers with dependent children, and victims of domestic or sexual violence.

Introduction48

Both licit and illicit drug use contribute to a significant financial and disease burden in Australia. [1] Currently, epidemiological data suggests that more men are diagnosed with substance use disorders relative to women. [1-7] However, there are sex and gender differences which distinguish patterns of addiction and behavior in both groups. These sex differences have a biological basis, with associations between oestradiol-related central pathways and the propagation of drug seeking behaviours in women relative to men. [2,6,8]

The difference in the prevalence and impact of substance use disorders between genders incorporates environmental, psychological and social factors. Currently, fewer women access drug treatment programs relative to men. [9] This may be representative of the fact that fewer women suffer from substance use disorders, however it may also reflect hindrances towards seeking or accessing treatment. Such barriers towards treatment include increased perceptions of stigma, dependent family members, and financial circumstances. [10-12]

Therefore, although more men are diagnosed with substance use disorders, a different approach towards prevention and treatment may be required for women. A review of the current literature is necessary to question whether an argument can be made to support gender-specific programs to address substance use disorders.

Definitions, epidemiology and gender differences

The term ‘substance use disorder’ as defined in the Diagnostic and Statistical Manual of Mental Disorders 5 (DSM-5) combines substance abuse and dependence associated with both licit and illicit drugs, which were previously distinguished in DSM-4. [13] Where possible, we refer to substance use disorders based on DSM-5 criteria. However, DSM-4 terminology is retained in order to maintain consistency with previous epidemiologic studies and data.

Differences in epidemiologic data, psychological factors, and clinical management may exist between the various types of substances; however, this article will focus on general principles in order to better understand sex and gender differences associated with substance use disorders and management options.

Licit drug use disorders refer to the legal use of legal drugs. Tobacco and alcohol are the most frequently used drugs – 15% of Australians over the age of 14 were daily smokers in 2010 while 24% were ex-smokers. [1] In 2012, approximately 78% of all Australians aged 14 and over drank alcohol during the year, with 18% drinking at harmful levels. [9]

Illicit substance use disorders, on the other hand, refer to the illegal use of legal drugs or use of illegal drugs. Although relatively uncommon compared to licit drugs, approximately 42% of Australians aged 14 and over reported using illicit drugs in their lifetime, with 15% reporting use in the last 12 months. [9] Cannabis, followed by ecstasy and hallucinogens were the most common illicit drugs used.

There are consistent reports that suggest a higher prevalence of substance abuse in men relative to women. [1-7] This is in keeping with data from the Australian Bureau of Statistics pertaining to Gender Indicators, which showed that men reported higher rates of substance use disorders in the year prior to data collection (7% males relative to 3% females) and throughout their lifetime (35% males relative to 14% females). [7] This is consistent with studies conducted in the United States (US) where, for example, a large survey of over 40,000 adults stated that men are twice as likely (13.8%) than women (7.1%) to address DSM-4 criteria for any drug use disorder.[3]

However, women have distinctly different patterns of drug use, which may be explained by a combination of sex and gender differences. [2,12] For instance, studies show that women tend to escalate drug use (relevant to alcohol, cannabis, opioids and cocaine) relative to men, which contributes to notion of the ‘telescoping phenomenon’. [2,6,12] The term suggests that the development of behavioural, psychological and medical consequences of a substance use disorder occur at a faster rate in women relative to men. [2,12] Notably, despite the use of relatively smaller quantities of drugs within a shorter timeframe, women show greater rates of adverse social and medical consequences. [3] Furthermore, Becker and Hu’s review [2] suggests that once drug addiction has been established, women find it more difficult to quit and are more prone to relapse following periods of abstinence in comparison with men.

Therefore, despite the fact that quantitatively more men may suffer from addiction, the differences in the pattern of drug seeking behaviour, escalation to use disorders, and treatment retention need to be addressed.

Sex differences

Sex differences relevant to drugs of addiction have been evidenced in both animal and human models. [2] Animal studies performed on rodents suggest that females are more likely to self-administer drugs of addiction (in this case cocaine) and have oestradiol-associated mechanisms to further propagate drug seeking mechanisms which are not present in male rodents. [2,6]

Oestrogen-mediated sex differences are evident in most phases of drug abuse including acquisition, maintenance, escalation and relapse. [2,8] Proposed mechanisms for this effect include direct interactions with the striatum and nucleus accumbens to facilitate dopamine release, and indirect interactions via sensitisation of receptors and changes in neuronal excitability. [6,8,14] The alterations in dopamine release act to regulate neurochemical responses and behaviours in favour of addiction, particularly to psychomotor stimulant drugs. [6,14]

Another contributing factor to the sex differences in drug addiction is the effect of the menstrual cycle on motivation behaviours. The impact of the menstrual cycle seems to be variable depending upon the timing of the cycle, hormone concentrations, and type of substance abused. For instance, increased euphoria, desire, and energy are enhanced when using cocaine in the follicular phase relative to the luteal phase. [2] In support of the notion that oestrogen plays a role in the perceived effects of drugs of addiction, the addition of oestradiol during the follicular phase resulted in a self-reported increase in the euphoric effects of dexamphetamine. [2]

Additionally, a review of 13 studies that investigated the impact of the menstrual cycle on smoking cessation suggested that women experience greater tobacco cravings and negative affect responses to tobacco withdrawal during the late luteal phase, where oestrogen and progesterone levels are diminishing. [2] The proposed mechanism for this is that the relatively higher oestrogen levels in the follicular phase may ‘alleviate some of the negative consequences’ associated with quitting smoking. Becker and Hu [2] support this theory by identifying a study that confirms the relationship between oestradiol, positive affect and decreased anxiety.

The variations in drug use and withdrawal symptoms during the menstrual cycle, such as increased euphoria when using cocaine during the follicular phase versus enhanced negative affect responses to tobacco withdrawal during the luteal phase, suggest that fluctuating oestrogen levels can have an impact on subjective experiences of substance use disorders.

It is difficult to truly isolate biological differences from psychosocial issues that may impact on the development and management of substance use disorders. However, there is evidence to support the significance of biological variations on the subjective experiences and outcomes associated with substance use disorders. These include the relationship between oestradiol and addiction behavior in animal studies, variations in drug-related experiences during the menstrual cycle, and the notion (detailed above) that women have a greater tendency to escalate drug use and develop adverse medical/psychological effects as a consequence of substance use disorders. The question remains as to whether the telescoping phenomenon in women requires a different management approach – are there any benefits of targeting women through specific programs or do mixed-gendered programs and facilities suffice?

Psychosocial differences

In addition to the identified biological differences in substance use disorders, psychosocial factors may contribute to variations in addiction behaviours, treatment initiation and outcomes. Such factors include, but are not limited to, psychiatric co-morbidities, dependent family members, financial issues and perceptions of stigma.

Studies suggest that women with substance abuse disorders are more likely to have a prior diagnosis of a psychiatric disorder relative to men, with more women meeting criteria for anxiety, depression, and eating disorders. [3] Potential contributing factors to this difference in mental health outcomes include higher rates of experienced trauma such as sexual abuse and/or intimate partner violence, disrupted family environments, and a perception of over-responsibility (such as caring for a child or other family members) in women relative to men. [3,10,11,15] The correlation between psychiatric disorders with substance use disorders urges the need for more holistic treatment. Specialised services that incorporate mental health into the management of substance use disorders have shown to yield better outcomes with respect to treatment retention and continuity of care. [16]

In addition to psychiatric co-morbidities, previous studies document a greater perception of stigma amongst female substance abusers, whereby women experienced higher levels of guilt, embarrassment and shame relative to males. [11,15,17,18] This has an impact on the willingness to seek and/or continue treatment not only for substance use disorders but other necessary community services. The Network of Alcohol and Other Drug Agencies (NADA) report suggests that women identified having difficulty accessing services such as pre-natal classes and housing support due to perceived stigma, discrimination and fear of judgment from child protection services. [11]

Social factors that hinder management of substance use disorders in women relative to men include: lower education levels and financial income, housing issues, interaction with child protection services, and dependent children and/or other dependent family members. [10-12] Green’s research [10] and NADA’s report [11] suggest that women experience relatively greater difficulty in finding time to attend regular treatment sessions due to family responsibilities and transport issues. The social factors mentioned above, in conjunction with the perception of stigma, act as significant barriers for women to access treatment. These need to be addressed in order to successfully promote women to seek initial treatment while providing necessary support to facilitate long-term management.

Current use of treatment facilities

Briefly, the types of treatment facilities in Australia as outlined by the AIHW’s report include [9]:

  • Assessment only, whereby agencies identify the severity of the issue and refer accordingly
  • Information and education only
  • Support and case management only
  • Counseling for individuals and groups through methods such as cognitive behavior therapy
  • Withdrawal management (home, in-patient, or out-patient)
  • Rehabilitation (residential treatment services, therapeutic communities or community-based rehabilitation)
  • Other holistic approaches, which include relapse prevention, living skills classes, safer using, etc.
  • Other health services include GP visits, hospital treatment and homelessness services.

In Australia, fewer women (32%) received treatment through alcohol and other drug treatment services relative to men (68%) in 2012-2013, which is consistent with studies conducted in the US where extensive research regarding the impact of gender on substance abuse is conducted. [9] It is unclear whether the reduced proportion of women seeking treatment is solely reflective of the relatively smaller number of women with addiction issues, or also inclusive of the financial and psychosocial factors that can prevent women from seeking treatment. [9]

Studies based in the US allow for the identification of gender differences between the types of facilities used for managing substance abuse disorders. Women are more likely to approach mental health or primary clinics rather than addiction treatment programs or specialty clinics. [3,19] It is proposed that this may be due to the perception that psychological distress and impairment associated in those substance use disorders may be better addressed by directly treating the mental health issue. [19]

There is limited research regarding the impact of this preference on treatment outcomes, however Mojtabai’s study [19] found that this pattern of treatment was less effective when compared to participants who sought help in specialty settings. [10] Management through facilities dedicated to substance use disorders was associated with a relatively reduced likelihood of continued substance use, with fewer participants reporting alcohol and substance use in the past month. [10,19] The study urges for better integration of substance use disorder management in the mental health system, and an efficient referral system across the ‘traditionally separate systems of care’. [19]

Future directions: utility of gender-based programs?

Services that provide comprehensive support by addressing medical, psychiatric and social issues (such as employment or child protection) have been shown to improve attendance, social adjustment and relapse rates in both men and women. [12,20] Previous research suggests that gender does not seem to predict patient retention, treatment completion, or patient prognosis once an individual begins treatment. [12] This seems to contradict the need for gender-specific programs, considering that treatment appears to offer equal benefit to both men and women. However, this needs to be considered in light of the fact that there are differences in the rates of treatment access between men and women, which may be explained in part by the psychosocial factors outlined above.

There is evidence to suggest the benefit of gender-specific programs or facilities in certain contexts. These include programs that focus on female-specific topics such as sexual abuse and body image, residential facilities for women with dependent family, and tailored care for pregnant mothers. [10,21] In 2005, the Drug and Alcohol Services Information System (DASIS) report in the US suggested that 41% of substance abuse treatment facilities that accepted female clients provided additional support programs specifically for women. [22] There are gender specific programs and facilities, including those dedicated to pregnant women, in most Australian states – although they may not be as numerous as those available in the US. For instance, out of 28 Network of Alcohol and Other Drug Agencies services in New South Wales, Australia, 7 provided women-only services. [11]

Gender specific psycho-education sessions on topics specific to women have received positive feedback in a few different studies. [11,16,19] These sessions allow for the discussion of more sensitive issues such as domestic violence, sexual abuse, parenting, weight and body image in a more comfortable scenario. [10,11,21] It is crucial that these programs are flexible and avoid the use of a confrontational style. [16] The presence of dynamic and interpersonal discussion is considered beneficial, and is suggested to occur more often and in an uninterrupted fashion in women-only programs. [16] The importance of self-expression without interruption is highlighted by the fact that unaddressed issues may result in adverse psychological effects. [16] Specific interventions that have been proven to be effective include but are not limited to: parenting skills for mothers on methadone maintenance, relapse prevention for women with post traumatic stress disorder, and relapse prevention for women with marital distress and alcohol dependence. [10,11,12]

Programs specific to women tend to offer facilities that allow for accompanying children (through child care support during clinics and day programs), and may also provide residential facilities for the client and dependent family.  Such facilities have been shown to have better treatment outcomes including longer lengths of stay. [11,12,16] Furthermore, family inclusive practices may have services that aim to repair relationships with children and family members thus enhancing support systems and the quality of the home environment.

Pregnant women with substance use disorders can be at high risk of numerous medical and social issues affecting their mental and physical health, which in turn impacts upon their risk of obstetric complications and the subsequent health of their baby. Pregnant women are more likely to: be of younger age, have previously given birth, have limited social supports (including limited financial stability) and have a concomitant psychiatric diagnosis. Such populations require a multitude of coordinated services and can significantly benefit from residential services, which allow for increased social support for themselves and dependent family. [11] Programs dedicated to pregnant and perinatal women have demonstrated significantly improved patient engagement and pregnancy outcomes. [12,23,24] Specific intervention programs that have yielded beneficial results for expecting mothers include alcohol interventions for pregnant women, contingency management to increase abstinence in pregnant women, and comprehensive service models for pregnant women such as access to prenatal care. [11] The benefit of customised care was highlighted by a study which recorded higher infant birth weights (2934 grams vs. 2539 grams) and a smaller proportion of neonatal intensive care admissions (10% vs. 26%) when comparing cocaine-dependent mothers who received twice-weekly addiction counseling with those who did not. [23]

In addition to gender-specific treatment, future directions may include a transition to more gender-sensitive services. [10] Suggested strategies include: matching therapist and client gender, mixed-gender group sessions concurrently led by both male and female leaders, and gender-specific treatment information or content. [10] The results of client and therapist gender matching are unclear. Some studies suggest that clients reported a sense of greater empathy resulting in longer treatment durations and lower rates of relapse, whilst other showed no difference in outcomes. [10]

Conclusion

There are documented sex differences with respect to substance use disorders through direct and indirect oestrogen-mediated mechanisms, the dopamine influence on nucleus accumbens and striatal pathways, and variable impacts of the menstrual cycle. These occur in addition to gender differences, which incorporate psychosocial variables such as psychiatric disorders, family environment, domestic violence, and social stigma. Currently, men experience higher rates of substance abuse relative to women; however, women are more likely to escalate drug use and suffer from biological and/or psychological consequences at lower doses and shorter durations of drug use. Additionally, women are less likely to enter treatment relative to men.

Studies provide inconclusive results regarding the benefits of gender-specific programs over those that have a gender-mix. However, there may be a need to support sub-populations of women including pregnant mothers, mothers with dependent children, and victims of domestic or sexual violence. Therefore, future directions include the need to increase awareness regarding substance use disorders, facilitate treatment for women in general, provide ongoing support to relevant subgroups, and consider a more gender-sensitive approach during management of substance use disorders.

Acknowledgements

The author wishes to acknowledge Dr. Christine Phillips and Dr. Elizabeth Sturgiss for their support and feedback.

Conflicts of Interest

None declared

Correspondence

A Jain: arunimajain12@gmail.com

References

[1] Australian Insitute of Health and Welfare. Drugs in Australia 2010: Tobacco, alcohol and other drugs. Canberra: AIHW; 2011.

[2] Becker JB, Hu M. Sex differences in drug abuse. Frontiers in Neuroendocrinology. 2008; 29(1):36-47.

[3] Back SE CR, Brady T. Substance Abuse in Women: Does Gender Matter [Internet] 2006. [updated 2006, cited 2015 March 12]; Available from: http://www.psychiatrictimes.com/substance-use-disorder/substance-abuse-women-does-gender-matter.

[4] Kessler RC, McGonagle KA, Zhao S, Nelson CB, Hughes M, Eshleman S, Wittchen HU, Kendler KS. Lifetime and 12-month prevalence of DSM-III-R psychiatric disorders in the United States. Arch Gen Psychiatry. 1994;51:8-19.

[5] Conway KP, Compton W, Stinson FS, Grant BF. Lifetime comorbidity of DSM-IV mood and anxiety disorders and specific drug use disorders: results from the national epidemiologic survey on alcohol and related conditions. J Clin Psychiatry. 2006;67:247-57.

[6] Roth ME, Cosgrove KP, Carroll ME. Sex differences in the vulnerability to drug abuse: a review of preclinical studies. Neuroscience & Biobehavioral Reviews. 2004;28(6):533-46.

[7] Australian Bureau of Statistics. Mental Health: Key Series 2013 [Internet]. 2013 [cited 2015 March 12]; Available from: http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/4125.0main+features3150Jan%202013.

[8] Carroll ME, Lynch WJ, Roth ME, Morgan AD, Cosgrove KP. Sex and estrogen influence drug abuse. Trends in Pharmacological Sciences. 2004;25(5):273-9.

[9] Australian Insitute of Health and Welfare. Alcohol and other drug treatment services in Australia 2012-13. Drug Treatment Series. Canberra: AIHW; 2014.

[10] Green C. Gender and use of substance abuse treatment services. [cited 2015 April 22]; Available from: http://pubs.niaaa.nih.gov/publications/arh291/55-62.htm

[11] Jenner L, Lee N, Cameron J, Harney A. Women’s alcohol and other drug services development program: needs analysis final report. Network of Alcohol and other Drug Agencies; 2014.

[12] Greenfield SF, Brooks AJ, Gordon SM, Green CA, Kropp F, McHugh RK, et al. Substance abuse treatment entry, retention, and outcome in women: a review of the literature. Drug Alcohol Dependence. 2007;86(1):1-21.

[13] American Psychiatric Association. Substance-related and addictive disorders [Internet]. 2013 [updated 2013; cited 2015 March 12];  Available from: http://www.dsm5.org/Documents/Substance%20Use%20Disorder%20Fact%20Sheet.pdf.

[14] Becker JB. Gender Differences in Dopaminergic Function in Striatum and Nucleus Accumbens. Pharmacology Biochemistry and Behavior. 1999;64(4):803-12.

[15] Nelson-Zlupko L KE, Dore MM. Gender differences in drug addiction and treatment: implications for social work intervention with substance-abusing women. Social work. 1995;40(1):45-54.

[16] Claus RE, Orwin RG, Kissin W, Krupski A, Campbell K, Stark K. Does gender-specific substance abuse treatment for women promote continuity of care? Journal of Substance Abuse Treatment. 2007;32(1):27-39.

[17] Brady KT, Randall CL. Gender differences in substance use disorders. The Psychiatric clinics of North America. 1999;22(2):241-52.

[18] Shimmin C. Understanding stigma through a gender lens. Canadian Women’s Health Network. 2009;11(2):14-7

[19] Mojtabai R. Use of specialty substance abuse and mental health services in adults with substance use disorders in the community. Drug and Alcohol Dependence. 2005;78(3):345-54.

[20] Marsh JC, Cao D, D’Aunno, T. Gender differences in the impact of comprehensive services in substance abuse treatment. Journal of Substance Abuse Treatment. 2004;27:289-300.

[21] Lindsay AR, Warren CS, Velasquez SC, Lu M. A gender-specific approach to improving substance abuse treatment for women: the healthy steps to freedom program. Journal of Substance Abuse Treatment. 2012;43(1):61-9.

[22] Center for Substance Abuse Treatment. Addressing the specific needs of women. Rockville:Drug and Alcohol Services Information System; 2009.

[23] McLellan TA Lewis DC, O’Brien CP, Kleber HD. Drug dependence, a chronic medical illness: implications for treatment, insurance, and outcomes evaluation. JAMA. 2000;284(13):1689-95

[24] Morris M, Seibold C. Drugs and having babies: An exploration of how a specialist clinic meets the needs of chemically dependent pregnant women. Midwifery. 2012;28:163-72.

Categories
Feature Articles

The gender imbalance in ADHD

The gender imbalance in ADHD47

Attention-deficit/hyperactivity disorder (ADHD) is a highly prevalent neuropsychiatric condition placing a considerable burden of disease on our population. ADHD primarily manifests in childhood with symptoms of inattention, hyperactivity and/or impulsivity that affect normal function. [1] Though ADHD affects both children and adults, current literature has focused greatly on the disorder in children and this paper will focus mainly on the paediatric population. Australian statistics reported ADHD as the leading mental and behavioural condition amongst children 0-14 years of age, accounting for 12% of children with a disability in 2004. [2] Furthermore, the diagnosis of ADHD in paediatric consultations has increased in frequency to almost 18% of the referred population. [3] Unfortunately, the prevalence of ADHD has been difficult to assess due to its heterogeneous nature and dependence on diagnostic criteria and classification. [4] Despite these obstacles, the reported demographic of ADHD has illustrated a skewed gender distribution towards males worldwide, creating a scope for exploring the gender differences in ADHD. [5-7] Current research has focused on theories supporting changing diagnostic criteria, phenotypic differences and biological differences to explain this gender difference in the prevalence of ADHD. However, to better understand this gender distribution, it is important to understand the terminology utilised in ADHD and how this has influenced current prevalence estimates for the disorder.

Definition of ADHD

The terminology and criteria surrounding ADHD have undergone significant revision over time. On the whole, it should be emphasised that normal childhood development displays active, impulsive and inattentive behavior and diagnosing ADHD should be based on a comprehensive subjective and objective assessment of the individual. [1] The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) provides specific criteria for diagnosing ADHD, but is also a prime example of the changing definition of the disorder. [1] ADHD was initially defined as a hyperkinetic reaction of childhood in the DSM-II, followed by Attention Deficit Disorder, with or without hyperactivity, in DSM-III, and finally ADHD with subtypes presented in DSM-IV. [8] The DSM-V now defines ADHD as pattern of inattention and/or hyperactivity-impulsivity that is persistent, interferes with development, has symptoms presenting in two or more settings, and directly impacts on the individual’s functional capabilities. [9] The core symptoms of inattention and hyperactivity-impulsivity each contain their own set of symptoms, of which six or more must be present in children and five or more in adults for at least 6 months prior to assessment. [9] The DSM-V has also reframed subtypes of ADHD from the DSM-IV to presentations including combined presentation, predominantly inattentive presentation and predominantly hyperactivity-impulsivity presentation. This evolving terminology has been implicated in many studies attempting to explain the differing prevalence of ADHD across the world, which, in turn, influences the gender distribution of ADHD.

Prevalence of ADHD

ADHD is a heterogeneous disorder with symptoms requiring both temporal and spatial conditions and the lack of definite diagnostic tools has prevented an accurate representation of the disorder worldwide. [4,8,10] Firstly, there are variations in methodology, including the diagnostic criteria used and evaluation of clinical impairment. [4] For example, studies may illustrate increased rates of childhood ADHD classified using the DSM-IV criteria but decreased rates in those who undergo further assessment, suggesting diagnostic inaccuracy. [10] Furthermore, a recent community-based study in America illustrated increasing prevalence estimates with the new DSM-V criteria for age of onset and symptom count, but decreasing prevalence with the new criteria requiring a degree of impairment due to the disorder, based on changing case definitions of ADHD. [8] Overall, there are strengths to having accepted diagnostic criteria in the DSM, however the lack of tools to identify and quantify these symptoms continues to be an obstacle in current prevalence estimates for ADHD.

In addition, the population sample (e.g. community or clinic) contributes greatly to varying prevalence estimates. [4] For example, an Australian study based on participants identified in a parental-reported survey illustrated an ADHD prevalence of 13.6% with a male: female prevalence ratio of 2:1. [6] Conversely, an Australian clinical study showed a greater gender difference with a male to female ratio of 4:1. [3] This illustrates a well-recognised pattern in the prevalence of ADHD where male to female ratios are higher in referred populations than in community-based samples. [4,7,11] The main explanation for this evident gender distribution between the population samples has widely been accepted as referral bias, whereby a myriad of factors has resulted in a greater number of males reaching clinics for diagnosis and management of ADHD. [11] There have been many factors found contributing to this referral bias including phenotypic differences, recognition of comorbidities and symptom reporting amongst the ADHD patient population. [11] Overall, the skewed gender distribution in ADHD prevalence is influenced by both methodology and population variables and these need to be carefully considered when analysing the role of gender in ADHD.

Phenotypic differences in ADHD

ADHD presents with a myriad of manifestations that share the underlying characteristics of inattention and/or hyperactivity. In general, the main differences in symptom recognition for ADHD differs with males being more likely to be recognised for externalising symptoms in contrast to females exhibiting internalising features. [5,7,12] These symptoms can be further described as males more likely to present with disruptive behaviours that correspond to the hyperactive-impulsive core symptoms whereas females are more likely to present with symptoms correlating to inattention. [6,7,10,12] Multiple studies have also shown that females are more likely to exhibit physiological anxiety, whereas males were reported for rule breaking and risk taking actions. [6,12] Females were also more likely to present with somatic complaints, which have been considered a marker for anxiety proneness across the literature. [7,12]

Furthermore, the recent inclusion of ADHD subtypes has added to the gender differences in ADHD, where females are found more likely to be diagnosed with predominantly inattentive ADHD whereas males are more commonly diagnosed with predominantly hyperactivity-impulsivity or combined presentations. [12,13] This, in turn, has consequences on the aforementioned referral bias, where females who are identified to have symptoms of ADHD were not considered impaired if exhibiting inattenttive ADHD, but considered severely impaired when exhibiting hyperactive-impulsive ADHD. [11,13] Another implication of these subtypes is the tendency for hyperactive and/or impulsive behaviour to lessen over time whereas inattentive behaviour tends to persist. [1] This, in turn, may lead to more males being recognised for their ADHD in childhood due to an increased tendency to express hyperactive/impulsive behaviour and for female patients to be under-recognised. [13] Phenotypic differences in ADHD play an important role in ascertaining the gender distribution of this disoder as these differences may result in referral bias and therefore account for the greater number of males recognised with the disorder. [11,13]

Comorbidities in ADHD

Comorbidity in childhood psychiatry is an expected phenomenon, with ADHD commonly presenting with common concurrent neuropsychiatric conditions. [14] For example, disruptive behavioural disorders such as oppositional defiant disorder have a high rate of comorbidity with ADHD, sharing particular symptoms with the hyperactive or impulsive subtype. [14] Similarly, anxiety disorders are also commonly diagnosed in patients with ADHD, usually with a more severe and distinctly inattentive clinical presentation. [15] Furthermore, these childhood psychiatric disorders appear to illustrate a similar gender distribution to that of ADHD, with disorders such as autism spectrum disorder being widely accepted to have a male predominance in childhood. [16] However, reports of comorbidity in ADHD is subject to the same limitations of referral bias, phenotypic differences and diagnostic criteria that influence the prevalence and gender distribution across childhood psychiatry. [14]

Furthermore, both males and females have been found more likely to have comorbid ADHD, in comparison to a solitary diagnosis of ADHD [17] Some studies have shown parents and teachers to report more difficulties with oppositional behaviours, social difficulties, depression and anxiety in females, compared to their male counterparts. [12] However others have illustrated an equal increase in presentation of comorbid conditions in the hyperactivity-impulsivity subtypes, with the gender difference being higher levels of comorbidity for females in the inattentive subtype through comorbid social and generalised anxiety disorders. [17] Another study found the only statistically significant gender difference to be a higher rate of substance use disorders in females with ADHD, particularly in early adolescence. [13] Overall, comorbidity in ADHD is an important consideration in studying the prevalence of the disease and how the gender distribution of these disorders can influence the gender distribution of ADHD.

Symptom reporting in ADHD

Firstly, many studies have commented on symptoms reported by patients, parents, teachers and clinicians – all of which provide different criteria for diagnosis of ADHD. Studies have shown self-reported symptoms to be highest in the clinical setting, whereas community-based research focuses heavily on parent- and teacher-reported symptoms. [12] A review of variations in ADHD prevalence mentioned that multiple studies have shown different rates of symptom reporting between parent and teacher. [4] Teachers’ contributions are substantial as they can provide daily observations of patients in comparison to unaffected individuals of the same age, environment and developmental level. [4] Parents are also valuable as they provide a change in an individual’s behaviour over time. However, both groups lend themselves to symptom recognition biased towards hyperactivity and impulsivity, as these tend to be more disruptive in both the school and home environment. This results in under-recognition of internalising symptoms such as depression and inattention, which, in turn, influence the rates of symptom reporting for ADHD. [4,12]

Furthermore, the culture surrounding ADHD has resulted in it being considered a male disorder. [5,10] This has multiple implications, from a greater tendency to recognise symptoms in the community to specialist referral for ADHD symptoms, with the social and cultural constructs of ADHD making males more likely to be subject to symptom reporting. [7,10] The lower prevalence rates have also been attributed to the higher likelihood of referral for disruptive behaviour, more commonly seen in the hyperactivity-impulsivity presentation or combined presentation of ADHD [11]. This, in itself, creates a skewed gender distribution as these have been illustrated at higher rates in the male population. [5] On average, there are more similarities than differences in the symptomatology of ADHD across genders, and symptoms are not sex-specific, but rather show trends as discussed above. [5,13] However, it is important to be aware of the gender differences when applied to ADHD subtypes, comorbid psychological conditions and the sources of symptom reporting for accurate diagnosis and management of ADHD in our population.

Biological Differences in ADHD

Biological factors have also been shown to influence gender differences in ADHD prevalence in our population. However, the majority of research conducted in this field has been underpowered due to the disproportionate number of males diagnosed with the disease, and the lack of drive to characterise any prospective sex differences. [18] A recent review discussed the evidence for neurogenetic and endocrine mechanisms, where differences in chromosomal composition, sex-linked genes and early exposure to hormones can interact to affect the manifestation of ADHD between sexes. [19] For example, there is an inherent sex difference in the male-limited expression of the Y chromosome and the presence of only one X chromosome, which leads to the presence of different genes and mutations that may influence neurodevelopment and susceptibility to ADHD between genders. [19]

Furthermore, there is increasing research into the anatomy and physiology of the neurological aspects of ADHD. This has illustrated a complex network of brain regions that are structurally modified to produce a developmental deviation in response to immature cortical under-arousal. [18] This has also produced gender differences whereby electroencephalography (EEG) studies have shown different patterns between males and females, and further differentiation between ADHD subtypes. [20] Overall, the current literature has emphasised a need for more focused research on the biological differences in ADHD to better characterise the profile of ADHD in males and females.

Management of ADHD

The implications of gender differences on the diagnosis and identification of ADHD have been discussed, however it is important to also consider the impact of gender on the management of ADHD. Pharmacological management in the form of stimulant medication has recently been gaining traction in current treatment practices for ADHD. [3,21] In general, current trends have shown that males with ADHD are more likely to receive pharmacotherapy and psychotherapy than females. [13] For example, in Western Australia, the prescription rates for stimulant medication were greater in males than females. [22] NSW Public Health illustrated a similar pattern, with males four times more likely to be on stimulant medication than females, though there has been an increase in the prescription patterns for females over the last two decades. [23] These statistics elucidate gender differences in practitioner trends and management of ADHD, however further investigation would be required to explain these trends in correlation to the disease recognition and prevalence as discussed earlier. In addition, it is also important to consider the possibility of gender differences in the treatment response for ADHD, though a recent population-based study has shown the response was favourable and did not differ between genders. [24]

In addition to pharmacological management, there is an increased role of behavioural intervention in the management of ADHD. Behavioural therapy represents a collection of specific interventions that modify the physical and social environment in order to change behaviour. [21] These interventions can be delivered through parental, classroom or peer interventions that reward desired behavioural traits and discourage undesirable behaviours through techniques such as planned ignoring, appropriate consequences and/or punishment. [21] When considering individual behavioural intervention in ADHD management, females are said to benefit from management of comorbid conditions such as mood and/or anxiety disorders that may exacerbate the expression of ADHD in combination with pharmacotherapy. [25] Mixed-gender treatment is another option for behavioural intervention in ADHD, which involves group-based behavioural interventions with both male and female patients. However, studies have shown gender differences to influence this management strategy as the mixed-gender setting may suppress treatment effect in females and fail to address gender-specific social impairments. [26] A recent American study investigated the effects of single- versus mixed-gender treatment for adolescent females and found females were more likely to benefit from single-gender treatment with more assertiveness, self-management and compliance. [26] Conversely, males exhibited lower levels of physical and relational aggression and better self-management and compliance in the mixed-gender setting. [26] Overall, behavioural intervention is important in the management of ADHD and needs to account for gender differences in disease presentation and response to treatment.

Future directions in ADHD

ADHD is rapidly gaining awareness for its burden of disease in our paediatric population. However, current literature has lacked focus in characterising important epidemiological trends in ADHD, such as the distribution between genders. Firstly, most of the discussion above has been based on studies using the DSM-IV criteria for diagnosis and therefore further studies based on the DSM-V criteria may again alter the gender prevalence of the disorder. Secondly, study design needs to account for population sample bias, especially between community- and clinic-based samples, in order to better estimate the disease and gender prevalence across the world. Studies also need to be designed with the aim of defining the phenotypic differences and the direct impact of these on symptom reporting in order to tailor future practice and better recognise ADHD throughout the population. The same should apply to biological differences and response to management, both pharmacological and behavioural as the main examples, for more effective clinical practice. It should also be noted this discussion focused mainly on paediatric ADHD, however current literature has seen rapid growth in research into adults with ADHD, though it is limited with regards to the gender distribution in these populations. Similar to the evidence discussed above, it is reasonable to expect the gender ratios in ADHD prevalence to be similarly affected by referral or identification bias, poorly defined diagnostic criteria and biological differences. [27] On the whole, the consensus across current literature is a need for further investigation that can better define the prevalence of ADHD in our population and the influence, if any, of gender.

Conclusion

ADHD is an increasing burden of psychiatric disease for our paediatric population with a reported greater prevalence amongst male patients. The skewed gender distribution of the disorder has been widely varied due to differing diagnostic criteria, terminology and research methodology. The differences found illustrated variation in disease presentation and psychological comorbidities, as well as biological differences that may account for the variation in disease presentation between genders. Furthermore, there were differences in reporting of ADHD symptomatology between patient, parent, teacher and clinician as well as differing trends in management that may influence the recognition and treatment of ADHD across our population. Overall, these differences warrant further research to better understand ADHD and characterise the disease profiles between males and females for increased accuracy in identification, diagnosis and treatment in our population.

Acknowledgements

Many thanks to Associate Professor Christine Phillips for introducing students to the social foundations of medicine and promoting discussion on a gender perspective.

Conflicts of interest

None declared.

Correspondence

M Bokil: bokil.mug@gmail.com

References

[1] National Health and Medical Research Council. Clinical Practice Points on the diagnosis, assessment and management of Attention Deficit Hyperactivity Disorder in children and adolescents. Commonwealth of Australia; 2012.

[2] Australian Institute of Health and Welfare (AIHW). Children with disabilities in Australia. AIHW cat. no. DIS 38. Canberra: AIHW; 2004.

[3] Efron D, Davies S, Sciberras E. Current Australian Pediatric Practice in the Assessment and Treatment of ADHD. Acad Pediatr. 2013;13(4):328-33.

[4] Skounti M, Philalithis A, Galanakis E. Variations in prevalence of attention deficit hyperactivity disorder worldwide. Eur J Pediatr. 2007;116(2):117-23.

[5] Ramtekkar UP, Reiersen AM, Todorov AA, Todd RD. Sex and age differences in Attention-Deficit/Hyperactivity Disorder symptoms and diagnoses: Implications for DSM-V and ICD-11. J Am Acad Child Adolesc Psychiatry. 2010;49(3):217-28.

[6] Graetz BW, Sawyer MG, Baghurst P. Gender Differences Among Children with DSM-IV ADHD in Australia. J Am Acad Child Adolesc Psychiatry. 2005;44(2):159-68.

[7] Rucklidge JJ. Gender differences in attention-deficit/hyperactivity disorder. Psychiatr Clin North Am. 2010;33(2):357-73.

[8] McKeown RE, Holbrook JR, Danielson ML, Cuffe SP, Wolraich ML, Visser SN. The Impact of Case Definition on Attention-Deficit/Hyperactivity Disorder Prevalence Estimates in Community-Based Samples of School-Aged Children. J Am Acad Child Adolesc Psychiatry. 2015;54(1):53-61.

[9] American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 5th edition. Arlington, VA: American Psychiatric Association; 2013.

[10] Sciutto MJ, Eisenberg M. Evaluating the Evidence For and Against the Overdiagnosis of ADHD. J Atten Disord. 2007;11(2):106-13.

[11] Coles EK, Slavec J, Bernstein M, Baroni E. Exploring the Gender Gap in Referrals for Children with ADHD and Other Disruptive Behaviour Disorders. J Atten Disord. 2012;12(2):101-8.

[12] Skogli EW, Teicher MH, Andersen PN, Hovik KT, Oie M. ADHD in girls and boys – gender differences in co-existing symptoms and executive function measures. BMC Psychiatry. 2013;13:298-309.

[13] Biederman J, Mick E, Faraone SV, Braaten E, Doyle A, Spencer T, et al. Influence of Gender on Attention Deficit Hyperactivity Disorder in Children Referred to a Psychiatric Clinic. Am J Psychiatry. 2002;159(1):36-42.

[14] Elia J, Ambrosini P, Berrettini W. ADHD Characteristics: I. Concurrent co-morbidity patterns in children and adolescents. Child Adolesc Psychiatry Ment Health. 2008;2(1):15-23.

[15] Halldorsdottir T, Ollendick TH. Comorbid ADHD: Implication for the Treatment of Anxiety Disorders in Children and Adolescents. Cogn Behav Pract. 2014;21(3):310-22.

[16] Werling DM, Geschwind DH. Sex differences in autism spectrum disorders. Curr Opin Neurol. 2013;26(2):146-53.

[17] Levy F, Hay DA, Bennett KS, McStephen M. Gender differences in ADHD subtype comorbidity. J Am Acad Child Adolesc Psychiatry. 2005;44(4):368-76.

[18] Cortese S. The neurobiology and genetics of Attention-Deficit/Hyperactivity Disorder (ADHD): What every clinician should know. Eur J Paediatr Neurol. 2012;16(5):422-33.

[19] Davies W. Sex differences in Attention Deficit Hyperactivity Disorder: Candidate genetic and endocrine mechanisms. Frontiers of Neuroendocrinology. 2014;35(3):331-46.

[20] Dupuy FE, Barry RJ, Clarke AR, McCarthy R, Selikowitz M. Sex differences between the combined and inattentive types of attention-deficit/hyperactivity disorder: An EEG perspective. Int J Psychophysiol. 2013;89(3):320-7.

[21] Subcommittee on Attention-Deficit/Hyperactivity Disorder, Steering Committee on Quality Improvement and Management, Wolraich M, Brown L, Brown RT, DuPaul G, et al. ADHD: Clinical Practice Guideline for the Diagnosis, Evaluation, and Treatment of Attention-Deficit/Hyperactivity Disorder in Children and Adolescents. American Academy of Pediatrics. 2011;128(5):1007-22.

[22] Preen DB, Calver J, Sanfilippo FM, Bulsara M, Holman CDAJ. Patterns of psychostimulant prescribing to children with ADHD in Western Australia: variations in age, gender, medication type and dose prescribed. Aust N Z J Public Health. 2007;31(2):120-6.

[23] Salmelainen P. Trends in the prescribing of stimulant medication for the treatment of Attention Deficit Hyperactivity Disorder in children and adolescents in NSW. Sydney, NSW: Department of Health; 2002.

[24] Barbaresi WJ, Katusic SK, Colligan RC, Weaver A, Leibson CL, Jacobsen SJ. Long-Term Stimulant Medication Treatment of Attention-Deficit Hyperactivity Disorder: Results from a Population-Based Study. J Dev Behav Pediatr. 2006;27(1):1-10.

[25] Quinn PO. Treating adolescent girls and women with ADHD: gender-specific issues. J Clin Psychol. 2005;61(5):579-87.

[26] Babinski DE, Sibley MH, Ross JM, Pelham WE. The Effects of Single Versus Mixed Gender Treatment for Adolescent Girls with ADHD. J Clin Child Adolesc Psychol. 2014;42(2):243-50.

[27] Williamson D, Johnston C. Gender differences in adults with attention-deficit/hyperactivity disorder: A narrative review. Clin Psychol Rev. 2015;40:15-27.

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Feature Articles

Vocal cord dysfunction: A co-existent or alternative diagnosis in refractory asthma?

Asthma is a common condition. Numerous studies have consistently demonstrated that refractory asthma, while constituting under 10% of all asthma patients, consumes a disproportionate amount of healthcare costs. It is therefore imperative for clinicians to be aware of common mimics of asthma that can present with similar symptoms leading to inaccurate assessment of asthma. One such mimic is vocal cord dysfunction, (VCD), which is the intermittent, abnormal adduction of the vocal cords during respiration. VCD can exist independently, but it frequently co-exists with asthma and consequently has been frequently misdiagnosed as asthma. The gold standard for diagnosing VCD is through direct visualisation via laryngoscopy, but there has been a move towards developing alternative non-invasive means of diagnosing VCD in the acute setting. This article reviews the literature surrounding VCD, including management options, both in the acute and long-term setting.

Introduction46

Asthma is a common condition. In 2011-2012 the prevalence of asthma was measured at 10.2%, which approximates to about 2.3 million Australians. [1] By international standards, this is a high statistic, translating to a significant burden on the healthcare infrastructure. An estimated $655 million was spent on asthma in the 2008-09 financial year, accounting for 0.9% of the total allocated healthcare expenditure.

The aim of asthma management is to achieve good long-term control. However, evaluation of asthma control relies heavily on symptom assessment. [2] The National Asthma Council of Australia utilises the Asthma Score to gauge a patient’s asthma control, based on frequency of asthma symptoms, nocturnal symptoms, effect on activities of daily living, as well as use of reliever medication. [3] However, it is challenging to distinguish between poorly controlled or refractory asthma versus an alternative diagnosis with a similar presentation. As such, this reliance on symptom assessment as a measure of asthma control has its shortcomings.

Numerous studies conducted across several countries have consistently demonstrated that refractory asthma, while constituting under 10% of all asthma patients, consumes a disproportionate amount of healthcare costs. [4,5] This often occurs in the setting of treatment failure and escalation of drug therapy, as well as recurrent or prolonged hospital admissions. [6] Current management guidelines advocate for clinicians to consider issues surrounding compliance, technique, as well as to reconsider the possibility of an alternative diagnosis in the context of treatment failure. It is therefore imperative for clinicians to be aware of common mimics of asthma or co-morbidities that can present with similar symptoms leading to inaccurate assessment of asthma control. One such mimic is vocal cord dysfunction (VCD).

Vocal cord dysfunction

VCD is the intermittent, abnormal adduction of the vocal cords during respiration. [7,8] It can affect both inspiratory and expiratory phases, resulting in variable upper airway obstruction at the level of the larynx. [6] VCD has been described throughout the medical literature by several terms, including Munchausen’s stridor [9], factitious asthma, [10] and paradoxical vocal cord dysfunction. [11]

Dunglison first described it in 1842, referring to it as ‘hysteric croup’ at that time. [12] Subsequent authors documented similar descriptions of this presentation under various names in the medical literature, but it was Mackenzie who first visualised the paradoxical closure of the vocal folds with inspiration by laryngoscopic evaluation in 1869. [13] Interest in VCD resurfaced in 1974, when Patterson et al. demonstrated modern laryngoscopic evidence of this pathology. [9] However, it was only from 1983, following a case series by Christopher et al. [14], that VCD was formally described as a syndrome, prompting a surge in interest until today.

Epidemiology

There are no large population-based studies examining the prevalence of VCD. The lack of specific diagnostic criteria for VCD further confounds evaluation of its epidemiology, leading to a range of prevalence estimates between 2.5 and 22% derived from small studies. [15] Nonetheless, it has been reported to be more prevalent among females, and is common in persons between 20-40 years of age. [16]

VCD can exist independently, but it frequently co-exists with asthma. In the first large case series involving 95 patients, Newman et al. reported 56% of patients had co-existing asthma. [8] Similarly, Yelken et al. found that VCD was present in 19% of 94 asthmatic patients, compared to 5% in 40 control subjects. [17] Parsons et al. concluded from their study of 59 patients that VCD occurs across a spectrum of asthma severity and is also prevalent in mild-to-moderate asthmatics. [18]

Correspondingly, the literature is replete with reports of VCD misdiagnosed as asthma. In a review by Morris et al. up to 380 of 1161 (32.7%) patients with VCD were initially misdiagnosed and in fact that many patients only had VCD without underlying asthma. [16] Similarly, Newman et al. concluded that VCD was the reason for treatment failure in 30% of cases in their prospective evaluation of 167 patients with refractory asthma. Among these cases, one third exclusively suffered from VCD, while the rest had co-existing asthma. [8]

Diagnosing VCD

While the gold standard for diagnosing VCD is through direct visualisation via laryngoscopy [19], this is often not frequently utilised due to practical reasons. There has been a move towards developing alternative non-invasive means of diagnosing VCD in the acute setting. Diagnostic approaches such as methacholine provocation [20] and video stroboscopy [21] have not proven useful in providing conclusive evidence to aid a diagnosis.

There is limited utility in using pulmonary function tests to diagnose VCD in the acute setting, this difficulty also being due to VCD’s intermittent symptoms. VCD may reduce both the forced expiratory volume in one second (FEV1) and forced vital capacity (FVC) with no change in the forced expiratory ratio (FER = FEV1/ FVC), suggesting that such a pattern in a patient undergoing evaluation for asthma should raise the possibility of VCD. Yet, a reduction in FER as consistent with an obstructive pattern such as asthma also does not rule out concomitant VCD. [8,16,22]. A characteristic truncation of the inspiratory limb of the flow volume loop has also been described in symptomatic inspiratory VCD, with similar changes to the expiratory loops in expiratory VCD. However, a review by Morris et al. found such FVL changes to be present in only 28.1% of all VCD patients. [16]

Traister et al. developed the Pittsburgh Vocal Cord Dysfunction index as a clinical tool to aid clinicians in distinguishing VCD from asthma clinically. [23] Based on the largest to-date retrospective study comparing 89 patients with VCD and 59 patients with asthma, the authors identified clinical features such as dysphonia, throat tightness and the absence of wheezing as key distinguishing symptoms of VCD. The Pittsburgh VCD index had good sensitivity (83%) and specificity (95%), and accurately corresponded with 77.8% of laryngoscopy-proven VCD. [23]

However, Traister et al. also cautioned against the use of the scoring index in patients with both VCD and asthma. Numerous studies have concluded that differentiating one condition from the other based on symptomology can be challenging if both conditions co-exist. [14] For example, Parsons et al. found that classic VCD features like hoarseness and stridor occurred infrequently in patients with both conditions and did not necessarily distinguish between asthmatics with and without VCD. [18]

Clinicians can also utilise several clinical signs and simple bedside tests to aid diagnosis. Localisation of airflow obstruction to the laryngeal area via auscultation is an important clinical discriminatory feature in patients with VCD. In addition to that, the disappearance or reduction of wheeze with expiration against positive pressure (via a straw) when auscultating over the larynx would suggest an element of VCD.

The introduction of high resolution 320-slice CT has permitted visualisation of the moving anatomical structures. [24] Holmes et al. explored the possibility of utilising this to provide comprehensive and accurate images of vocal cord movement during respiration. In this study, dynamic 320-slice volume CT accurately identified VCD in 4 of 9 patients diagnosed with asthma. [24] Colour Doppler ultrasound of the vocal cords has also been suggested as a potential means of diagnosing symptomatic VCD, with accuracy approximating that of laryngscopy, according to one report. [25]

Management of VCD

Management of VCD first requires establishing the correct diagnosis.  While this may be difficult in the acute setting, it is imperative as continuing to treat for asthma will not yield any benefit.

Reassurance of the patient has been widely reported in numerous case reports as effective in terminating VCD in the acute setting. [10,26,27,28,29] Adopting breathing patterns such as panting, [30,31] diaphragmatic breathing or breathing against positive-pressure (through a straw, pursed-lip breathing) have also been described as effective measures to abort VCD symptoms acutely. Similarly, administering positive pressure ventilation via CPAP has been demonstrated in several case reports to resolve an acute attack. [32]

Benzodiazepines have been noted to be very effective in terminating VCD episodes, mainly for their anxiolytic and sedative effect. [16] Heliox, a mixture of oxygen and helium, has also been used to both treat and differentiate VCD from other causes of airway obstruction, with a rapid and effective response [33], however larger studies are lacking.

The long-term management of VCD revolves mainly around a multidisciplinary approach. Speech therapy has been identified as a mainstay treatment for VCD, with emphasis on vocal cord relaxation and breathing techniques. [34] Psychological interventions, such as psychotherapy, behavioural therapy as well as the use of anxiolytics and antidepressants have also been demonstrated in a systematic review to be useful adjuncts to speech therapy. [35]

There is a paucity of high quality randomised control trials studying therapeutic options for VCD. Botulinum toxin has been used to relieve symptoms of VCD in several cases, although its use is at present largely experimental due to the lack of research. Its neuromuscular effect of inhibiting acetylcholine release relaxes laryngeal muscles which lasts up to 14 weeks, facilitating inspiratory and expiratory airflow. [36] Baxter et al. evaluated the benefits of botulinum toxin in a small sample size of 11 patients with treatment resistant asthma and abnormal vocal cord movement. Asthma control test scores (a five-question self-administered tool), CT visualisation of vocal cord narrowing, as well as spirometry were used to evaluate response following botulinum toxin treatment. The study concluded that local treatment with botulinum toxin could be effective in these cases, although a placebo effect could not be ruled out. [37]

Conclusion

The novel utilisation of existing imaging techniques has facilitated the diagnosis of VCD, a condition that has been described since the 19th century, yet it continues to remain a diagnostic challenge because it demands certain level of clinical suspicion prior to further workup.  There is also a lack of awareness of its existence and its presentation consequently has often been attributed to asthma. This is further complicated by its common coexistence with asthma, which can lead to unnecessary medication use without beneficial impact and increased health care utilisation.

Acknowledgements

None.

Conflict of interest

None declared.

Correspondence

G Yong: glenn.yong.kw@gmail.com

References

[1] Australian Bureau of Statistics. Australian Health Survey: First Results, 2011-12 [Internet]. 2012. Available from: http://www.ausstats.abs.gov.au/Ausstats/subscriber.nsf/0/1680ECA402368CCFCA257AC90015AA4E/$File/4364.0.55.001.pdf

[2] Pocket Guide for Asthma Management and Prevention | Documents / Resources | GINA [Internet]. [cited 2014 Sep 2]. Available from: http://www.ginasthma.org/documents/1

[3] Australian Asthma Handbook | Table. Asthma Score (printable) [Internet]. Australian Asthma Handbook. [cited 2014 Sep 2]. Available from: http://www.asthmahandbook.org.au/table/show/88

[4] Serra-Batlles J, Plaza V, Morejón E, Comella A, Brugués J. Costs of asthma according to the degree of severity. Eur Respir J. 1998 Dec;12(6):1322–6.

[5] Godard P, Chanez P, Siraudin L, Nicoloyannis N, Duru G. Costs of asthma are correlated with severity: a 1-yr prospective study. Eur Respir J. 2002 Jan;19(1):61–7.

[6] Kenn K, Balkissoon R. Vocal cord dysfunction: what do we know? Eur Respir J. 2011 Jan 1;37(1):194–200.

[7] Newman KB, Dubester SN. Vocal Cord Dysfunction: masquerader of asthma. Semin Respir Crit Care Med. 1995;161–7.

[8] Newman KB, Mason UG, Schmaling KB. Clinical features of vocal cord dysfunction. Am J Respir Crit Care Med. 1995 Oct;152(4 Pt 1):1382–6.

[9] Patterson R, Schatz M, Horton M. Munchausen’s stridor: non-organic laryngeal obstruction. Clin Allergy. 1974 Sep;4(3):307–10.

[10] Downing ET, Braman SS, Fox MJ, Corrao WM. Factitious asthma. Physiological approach to diagnosis. JAMA J Am Med Assoc. 1982 Dec 3;248(21):2878–81.

[11] Newsham KR, Klaben BK, Miller VJ, Saunders JE. Paradoxical Vocal-Cord Dysfunction: Management in Athletes. J Athl Train. 2002 Sep;37(3):325–8.

[12] Dunglison RD. The Practice of Medicine. Phila Lea Blanchard. 1842;257–8.

[13] Mackenzie M. The use of the laryngoscope in diseases of the throat : with an appendix on rhinoscopy [Internet]. Philadelphia : Lindsay and Blakiston; 1865 [cited 2014 Sep 6]. Available from: http://archive.org/details/67821040R.nlm.nih.gov

[14] Christopher KL, Wood RP, Eckert RC, Blager FB, Raney RA, Souhrada JF. Vocal-cord dysfunction presenting as asthma. N Engl J Med. 1983 Jun 30;308(26):1566–70.

[15] Jain S, Bandi V, Zimmerman J. Incidence of vocal cord dysfunction in patients presenting to emergency room with acute asthma exacerbation. Chest. 1997;(11):243.

[16] Morris MJ, Allan PF, Perkins PJ. Vocal Cord Dysfunction: Etiologies and Treatment. Clin Pulm Med. 2006 Mar;13(2):73–86.

[17] Yelken K, Yilmaz A, Guven M, Eyibilen A, Aladag I. Paradoxical vocal fold motion dysfunction in asthma patients. Respirol Carlton Vic. 2009 Jul;14(5):729–33.

[18] Parsons JP, Benninger C, Hawley MP, Philips G, Forrest LA, Mastronarde JG. Vocal cord dysfunction: beyond severe asthma. Respir Med. 2010 Apr;104(4):504–9.

[19] Al-Alwan A, Kaminsky D. Vocal cord dysfunction in athletes: clinical presentation and review of the literature. Phys Sportsmed. 2012 May;40(2):22–7.

[20] Perkins PJ, Morris MJ. Vocal cord dysfunction induced by methacholine challenge testing. Chest. 2002 Dec;122(6):1988–93.

[21] Ibrahim WH, Gheriani HA, Almohamed AA, Raza T. Paradoxical vocal cord motion disorder: past, present and future. Postgrad Med J. 2007 Mar;83(977):164–72.

[22] Niven RM, Pickering CA. Vocal cord dysfunction and wheezing. Thorax. 1991 Sep;46(9):688.

[23] Traister RS, Fajt ML, Landsittel D, Petrov AA. A novel scoring system to distinguish vocal cord dysfunction from asthma. J Allergy Clin Immunol Pract. 2014 Feb;2(1):65–9.

[24] Holmes PW, Lau KK, Crossett M, Low C, Buchanan D, Hamilton GS, et al.  Diagnosis of vocal cord dysfunction in asthma with high resolution dynamic volume computerized tomography of the larynx. Respirol Carlton Vic. 2009 Nov;14(8):1106–13.

[25] Ooi LL. Re: Vocal cord dysfunction: two case reports. Ann Acad Med Singapore. 1997 Nov;26(6):875.

[26] Michelsen LG, Vanderspek AF. An unexpected functional cause of upper airway obstruction. Anaesthesia. 1988 Dec;43(12):1028–30.

[27] Lund DS, Garmel GM, Kaplan GS, Tom PA. Hysterical stridor: a diagnosis of exclusion. Am J Emerg Med. 1993 Jul;11(4):400–2.

[28] Dailey RH. Pseudoasthma: a new clinical entity? JACEP. 1976 Mar;5(3):192–3.

[29] George MK, O’Connell JE, Batch AJ. Paradoxical vocal cord motion: an unusual cause of stridor. J Laryngol Otol. 1991 Apr;105(4):312–4.

[30] Brugman SM, Simons SM. Vocal cord dysfunction: don’t mistake it for asthma. Phys Sportsmed. 1998 May;26(5):63–85.

[31] Pitchenik AE. Functional laryngeal obstruction relieved by panting. Chest. 1991 Nov;100(5):1465–7.

[32] Reybet-Degat O. [Pathology of craniocervical junction and sleep disorders]. Rev Neurol (Paris). 2001 Nov;157(11 Pt 2):S156–60.

[33] Weir M. Vocal cord dysfunction mimics asthma and may respond to heliox. Clin Pediatr (Phila). 2002 Feb;41(1):37–41.

[34] Bahrainwala AH, Simon MR. Wheezing and vocal cord dysfunction mimicking asthma. Curr Opin Pulm Med. 2001 Jan;7(1):8–13.

[35] Guglani L, Atkinson S, Hosanagar A, Guglani L. A systematic review of psychological interventions for adult and pediatric patients with vocal cord dysfunction. Front Pediatr. 2014;2:82.

[36] Grillone GA, Blitzer A, Brin MF, Annino DJ, Saint-Hilaire MH. Treatment of adductor laryngeal breathing dystonia with botulinum toxin type A. The Laryngoscope. 1994 Jan;104(1 Pt 1):30–2.

[37] Baxter M, Uddin N, Raghav S, Leong P, Low K, Hamza K, et al. Abnormal vocal cord movement treated with botulinum toxin in patients with asthma resistant to optimised management. Respirol Carlton Vic. 2014 May;19(4):531–7.

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Feature Articles

Saving behaviour cleans hands: A reflection on the behavioural psychology of hand hygiene

Introduction44

Since the time of Semmelweis, it has long been realised that hands are the commonest vehicles for the spread of hospital-acquired infections (HAI). If all transmission opportunities, as defined by the World Health Organisation (WHO), were met with proper hand hygiene, the current incidence of HAIs could reduce by more than half. [1-3] Unfortunately, almost every hospital fails at this. Globally, the diverse roots of noncompliance in healthcare workers (HCWs) need to be tackled in a multifactorial way. Lack of resources, high-intensity workloads and ignorance about hand hygiene necessity or technique are often first to be blamed and rightly so, according to large studies in multiple countries. [4-6] However, in most Australian hospitals where regularly-replenished hand hygiene products sit at every bedside and informative posters are abound on corridor walls, compliance still remains at 82.2&. [7] Ajzen’s Theory of Planned Behaviour (TPB) proposes that it is not only the factors external to the individual, such as those aforementioned, but also internal behavioural factors that shape an individual’s hand hygiene practices. [8] These internal factors, often less explored than external factors, will be the topic of discussion.

 Centrality of Intention

The central thesis of TPB is this: the likelihood of performing a voluntary behaviour is best predicted by the intention to do it. [8] According to Ajzen, intention is the extent of effort one is willing to go to in order to achieve that action. [8] A 2012 Cochrane review and a landmark hand hygiene behavioural study by O’Boyle et al. demonstrates this positive association between intention and behavioural achievement. [15,16] Even so, it is imperative early in this discussion that we not assume that self-reported scores are good measures of actual compliance; in reality, the association is demonstrably poor because external factors do commonly prevent intention from actualising as behaviour. [15,17] However, external factors are not the focus here.

Intention is determined by three secondary internal factors – attitude, social norm and perceived behavioural control – that are, in turn, a function of beliefs based on one’s information about a behaviour. [14] We will now explore these factors in detail.

Attitude

Attitudes derive from an individual’s cognitive and emotional evaluation of behaviour. This evaluation, in turn, depends on the various positive or negative attributes and consequences the individual has associated with the behaviour. If HCWs perceive positive attributes about hand hygiene, the desirable attitudes this yields increases their levels of intention and correlate well with compliance. [6,14,15] One’s perceptions hinge on one’s beliefs about a behaviour. [14,15] Based on a focus group study of 754 nurses and a 2006 review, beliefs about hand hygiene can originate inherently or electively and account for 64% and 76%, respectively, of variation in intention. [18]

Inherent beliefs

During most individuals’ childhoods, exposure of hands to ‘dirtiness’ becomes ritualised as a trigger for disgust and the subsequent urge to cleanse one’s hands. Consequently, inherent patterns develop. [18-20] The toilet-training years may see a solidification of positive attitudes towards hand hygiene behaviours specifically in situations where individuals feel the instinctual need to ‘emotionally cleanse’ themselves. [18] This positive association appears consistent across diverse demographic groups. [21] However, what varies is each individual’s tolerance threshold of contamination before they feel the urge to cleanse, in accordance with culture, exposure to education and environment. [1] The 500 Australian respondents to a 2008 international hygiene beliefs survey on average scored one of the lowest levels of concern about “getting sick because of poor hygiene” and “being infected in contact with other people”. [22] Yet, a similar survey found that Australians do still place a strong emphasis on handwashing. [23] In reality, the hand hygiene standards promoted by Australian culture in general may be suboptimal to what is actually required for microbiological protection. It is common for nurses to only feel compelled to wash their hands after becoming ‘emotionally soiled’ from touching patients’ axillae, groins, genitals or excretions, if visibly contaminated, or from feeling moist or gritty, but not in other situations. [18] Although long-standing, developmentally-based inherent beliefs about dirtiness are possibly the most challenging of the psychological factors to address, one intervention could be the incorporation of emotionally evocative themes and slogans in infection control campaigns.

Compliance figures also suffer when the inherent belief associating hand hygiene with self-protection is undermined by products that have caused users pain, discomfort and/or the occasional hypersensitivity reaction. With the transition to the standardised use of emollient-containing alcohol-based handrubs (ABHR) across Australian healthcare facilities since 2008, the skin damage, irritation and dryness associated with handwashing with soap have dramatically reduced. [24-26] Although the addition of emollients to the ABHR solutions has greatly reduced associated stinging sensations and contact dermatitis, ABHRs remain painful to use for some, most likely due to improper use, having split or cracked skin, or allergic dermatitis. [26] Whatever the reason, the formation of new inherent beliefs that emotionally link pain and discomfort with correct hand hygiene behaviour continually works to worsen behavioural compliance. [1,27] It seems the only way to address this problem is to await advances in dermatological products in order to further enhance the dermal tolerance of ABHRs.

Elective beliefs

On the other hand, elective attitudes originate from beliefs that deliver the schema of hand hygiene over to choice. Elective beliefs measure various hand hygiene behaviours according to a less intuitive outcome of a higher order – microbiological self-protection proved by objective laboratory evidence. The opportunities for hand hygiene just after HCWs touch ‘emotionally clean’ parts of patients or inanimate surroundings, autoclaved equipment, hospital telephones or computers are the key targets of these elective beliefs. [18] Inherent disgust alone cannot be relied upon to stimulate enough intention in HCWs to engage in appropriate disinfection during these situations. Indeed, it is no surprise that hand hygiene opportunities that specifically relate to elective beliefs are the ones most frequently neglected by nurses, especially during peaks in workload. [18]

It seems the solution is not as simple as correcting inaccurate elective beliefs. In contrast with the way inherent beliefs naturally permeate one’s attitudes, translating elective beliefs into attitudes is often met with resistance. [18] Although the best targets for change would be unique for every HCW, some common determinants affecting elective belief-to-attitude translation have been identified. Firstly, elective beliefs regarding hand hygiene opportunities at work also tend to mirror hygiene beliefs about corresponding out-of-hospital situations. The more concerned a HCW is about handwashing before preparing a meal or after stroking pets or using a computer, the more likely they are to have positive attitudes about using the proper hand hygiene after ‘emotionally clean’ events at work. [18] Notably, the previously mentioned 2008 hygiene beliefs survey demonstrated Australians were amongst those who expressed the lowest concern for “hand hygiene while cooking and eating”. [22] Perhaps, infection control campaigns could be made more effective by challenging the household habits and beliefs of HCWs in addition to their usual chastisements targeting scenarios within the work context.

Secondly, although this subject requires further research, religious attitudes concerning hand cleansing rituals could also influence the elective beliefs of Buddhist, Hindu, Muslim and Orthodox Jewish HCWs. They are encouraged, if not commanded, to clean their hands for hygiene, usually following ‘unclean’ acts and meals. [1] Additionally, having a community-oriented mindset in favour of protecting others would also strengthen positive attitudes towards hand hygiene. [1] Although less than 7.3% of the Australian population affiliate with these religions and much of Western society tends towards individualistic ideals, [28] these findings could assist local campaigns in areas where there are more individuals within these target groups, for example, at hospitals located in culturally and linguistically diverse suburbs.

Lastly, a more modifiable aspect of elective beliefs that could strengthen good attitudes is having a solid understanding of the scientific evidence proving the microbiological protectiveness of hand hygiene. [20] Most awareness campaigns rely heavily on the positive association between good knowledge, belief in the strong efficacy of hand hygiene practices, and compliance. [1] The Australian National Hand Hygiene Initiative recommends “evidence-based education on all aspects of hand hygiene in healthcare” for student HCWs, and for local initiatives to help HCWs “understand the evidence underlying the recommendation” to use ABHRs. [29]

The evidence is up-to-date and irrefutable, the studies too countless to ignore. Proper hand hygiene curtails HAI rates dramatically. [3,30-38] Yet, despite awareness campaigns and convenient online access to the major literature, HCWs (mostly in developed nations) still cite the lack of convincing evidence as their reason for non-compliance. [18,20] There are several common reasons for this. The evidence base does lack randomised controlled trials (RCTs) that are hospital-based and double-blinded. However, such studies are unfeasible; it is impossible to blind subjects from their own hand hygiene practices, implementing a control group would clearly be unethical to patients, and it is extremely difficult to simulate a realistic hospital working environment (the lack of which may confound results). [39] Nevertheless, ample community-based open RCTs and cluster trials have produced sufficiently convincing, high-quality results. [40-44] Another common objection blames ABHRs for increasing the incidence of Clostridium difficile-associated diseases. However, this has long been epidemiologically refuted. [1,32,45-49] Perhaps the deepest reason why it is not sufficient to simply educate HCWs about the evidence of the benefits to patients is this – being convinced about the self-protective efficacy of elective hand hygiene motivates many HCWs much more than knowing its patient-protective efficacy does. This attitude has been a recurrent finding across the various age groups, levels of employment experience and backgrounds of scientific training. [18,20] It may do well for awareness campaigns to place even greater emphasis on evidence demonstrating the self-protective nature of hand hygiene.

Subjective Norm

The second determinant of intention is subjective norm – the perception of how positively hand hygiene is endorsed by the people one respects within the workplace. [15,50] Staff members viewed as role models have the greatest impact on a HCW’s subjective norm. In 2009, Erasmus et al. conducted focus group studies on 65 nurses, consultants, junior house officers and medical students across five hospitals. Although their study was Netherlands-based, Erasmus et al.’s analysis of the social norm dynamics occurring within a hospital environment still offers key insights into the interplay between subjective norms and compliance for Australian HCWs. The study subjects most commonly identified doctors and experienced nurses, such as nurse managers, as their role models for clinical practice. [20] Another study also identified hospital administrators as role models. [18] At a busy neonatal intensive care unit, staff intention to practise good hand hygiene significantly increased when senior staff members’ opinions on the practice were perceived to be more favourable. [51] Thus, mass improvement could be found in encouraging the role models of each workplace to be thoughtful in their speech, ideas and habits, especially when around their colleagues.

Conversely, Erasmus et al. also highlighted how negative role models have the greatest power over medical students and junior nurses. [20] Perhaps this is because junior members of the healthcare team are frequently the most sensitive and feel that their behavioural control (explored in the next section) is being limited whenever subjective norms are defined by negative role models. [52] For example, in the study, many medical students believed they were unable to satisfactorily disinfect their hands between seeing patients on ward rounds because they would otherwise fall behind the rest of the team. Furthermore, in attempts to assimilate into their working environments, students admitted to imitating hospital staff, particularly doctors, without questioning their actions first. These findings demonstrate how the cycle of noncompliance could persist from one generation of role models to the next. [20] It is possible that the pressure on students to imitate senior HCWs could arise from the heuristic method of teaching common in medical schools, as well as the professional expectation that senior doctors mentor junior doctors. Being encouraged to learn from supervisors opportunistically, students often slip into the habit of accepting all advice unfiltered. Students may benefit from being regularly reminded of this pitfall by their clinical preceptors.

Peer HCWs, although not role models, may also degrade subjective norms in a hospital by contributing to its ‘culture’ of noncompliance. A negative subjective norm rooted in so widespread an acceptance of noncompliance can inform the elective beliefs and attitudes of less-experienced HCWs who may be more vulnerable to believing whatever they observe to be correct. [20] A cross-sectional survey of 2961 staff revealed that doctors and nurses experienced a strong direct association between intention and peer pressure from within their own respective professions. [53]

There have been many interventional attempts to nurture a culture of compliance. Many Australian hospitals have designated ‘hand hygiene champions’ as culture-enforcers and role models. Infection control teams design encouraging posters and use frequent audits with feedback to staff in attempts to stimulate inter-ward competitiveness and a sense of shared responsibility about compliance. However, a subculture of resistance to these strategies has emerged. [54] It is not uncommon to hear staff comment with an undertone of rebellion, “I wash my hands for extra long when the infection control police are around.”

Perceived Behavioural Control

The third independent determinant of intention, perceived behavioural control, describes one’s self-perceived likelihood of performing an action. [15,51] As part of a focus group study, Australian nurses identified the most common external influences on their control over hand hygiene performance. Many felt they lacked the relevant training in infection control. They reported that regular education programs and simple “Five Moments” charts placed around wards would avert any growing misconceptions about the need for disinfection after touching patient surroundings and remind them when they forget or get distracted. [55] During peaks in busyness or emergencies, HCWs have also indicated having no time to adhere to every moment of hand hygiene. Other times, when in the middle of performing certain tasks, they may feel unable to interrupt the activity to go clean their hands midway. Lastly, disapproval of hand hygiene by senior staff, mostly doctors, was discussed as a salient issue in focus group studies. All these factors were negatively associated with intention, measured by self-reported compliance. [6,20,53,55,56]

There is an important distinction between one’s perceived control, dependent on internal cognisance of how external factors affect one’s behaviour, and the actual ability of control they have been afforded by these external factors; the two commonly differ. [57] The link between actual ability and internal cognisance is self-efficacy. For an individual already familiar with infection control theory and technique, self-efficacy manifests as the confidence to actually practise what they have learnt when it is required. Alternatively, interventions seeking to increase self-efficacy of HCWs who find themselves constrained by time restrictions or the overbearing opinions of senior staff may involve improving HCW assertiveness, knowledge about hospital policy regarding patient safety, and practise in escalating concerns with other staff. [57] Training could involve testing a student’s capacity to remind a HCW to decontaminate their hands after observing them failing to do so while on the wards. [57]

Summary

Why is it that HCWs fail to clean their hands? Using the TPB framework, we explored the internal behavioural factors underlying noncompliance. HCWs’ beliefs about hand hygiene are informed by elements both at work and in the community. These perceptions define attitude, subjective norms and perceived behavioural control, which predict intention to clean one’s hands. With this understanding, it is imperative that interventions addressing compliance do not ignore these modifiable influences on HCWs. Table 1 is a summary of interventions suggested in this article. Addressing the behavioural psychology of hand hygiene might just be the final nail in the coffin for hand-transmitted HAIs.

45

Acknowledgements

None.

Conflict of interest

None declared.

Correspondence

R Aw-Yong: raelene.awyong@my.jcu.edu.au

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Categories
Feature Articles

So you want to be a haematologist?

Introduction42

Discussion surrounding specialties of preference is commonplace in medical school, across all levels of training. Some are attracted to the breadth of care afforded in general practice, the in-depth expertise of organ systems in physician specialties, or the hands-on experience with human anatomy in surgery. A few of us however, appreciate the opportunity to care for patients by the bedside, followed by investigating their bodily samples under the microscope in search of an answer to their problems.

Belonging to the last group, I present this article which summarises my elective term experiences in haematology at the Olivia Newton-John Cancer & Wellness Centre and the Guy’s Hospital. This, I hope, will shed some light on haematology as a potential field of interest for medical students – one that many of us consider ‘exotic’ and thus, perhaps, less pursued.

Haematology – what’s in a specialty?

Haematology is an integrated discipline that incorporates both clinical and laboratory skills to diagnose and treat diseases of the blood and blood-forming (haematopoietic) organs. [1] The blood’s cellular components include the red blood cells, white blood cells and platelets, which are derived from the bone marrow in steady-state conditions. Extra-medullary haemopoiesis in the liver and the spleen occurs in certain disease states, for example in marrow failure syndromes and haemoglobinopathies. In addition, the coagulation factors, which assist clotting, are also an important part of the haematological system. Principally, haematologists treat disorders which arise from derangement of any of these blood components – too high, too low or dysfunctional – as a result of diverse pathological processes, broadly classified as malignant or non-malignant. [2]

Clinical exposure and latest research

To set the scene, my first placement took place at the Olivia Newton-John Cancer & Wellness Centre in Melbourne. A new addition to the Austin Health complex in 2013, it is a comprehensive cancer centre which offers a holistic approach to patient care. On top of routine clinical care, the Olivia Newton-John Cancer & Wellness Centre provides a range of wellness therapies, such as music therapy, art therapy and massage. [3] Following a short vacation, I then set off to London, where I undertook my second placement at the Guy’s Hospital, a major teaching hospital affiliated with King’s College London. Located in Central London, this is the hospital where Thomas Hodgkin once worked. [4] I would like to share interesting current trends in clinical haematology I came across whilst on this placement.

At the Guy’s Hospital, I was privileged to work with the Myeloproliferative Neoplasms (MPN) Unit, an internationally renowned centre for the care of patients with MPN spectrum: polycythaemia vera (PV), essential thrombocythemia (ET), and primary myelofibrosis (MF). The MPN are characterized by clonal proliferation of myeloid progenitor cells in the bone marrow and in many cases, liver and spleen. [2] The advent of rapid genome-wide sequencing has identified a number of important mutations responsible for these disorders, including mutations in the Janus kinase 2 (JAK2), the MPL proto-oncogene, thrombopoietin receptor (MPL), and most recently the calreticulin (CAL-R) genes. [5] A particularly important ‘newcomer’ for MPN treatment I encountered there was ruxolitinib, a JAK1/2 inhibitor, which has been licensed for MF since the landmark publication by Prof. Claire Harrison in 2012. [6] This paper demonstrates superior efficacy of ruxolitinib compared to conventional therapy (usually hydroxyurea), in improving splenomegaly and overall quality of life. In addition, there is some evidence that ruxolitinib may also improve survival in patients with MF, although this needs to be further investigated. [7] Witnessing patients’ experiences first hand in her MPN clinics was a fantastic experience; especially given the limited efficacy and increased complications experienced with hydroxyurea. [6] At the moment, the Guy’s Hospital and other centres of excellence in the UK and Europe are running further clinical trials assessing the use of ruxolitinib in PV, with promising results reported in a recent study. [8] With corroborative studies, it is anticipated that ruxolitinib will be incorporated into the standard of care for patients with PV as well.

On the other hand, I spent most of my placement time at the Olivia Newton-John Cancer & Wellness Centre on ward service. An important lesson I took away is the clinical care of serious infections in haematology patients. Febrile neutropenia is the most common and important infective issue suffered by up to 80% of neutropenic patients with haematological malignancies on chemotherapy. [9,10] Primary haematological disease, along with high-dose chemotherapy, results in profound neutropenia, putting patients at risk of invasive bacterial infections. Compounding this risk is chemotherapy-induced gastrointestinal damage, which allows for translocation of enteric bacteria into the blood, causing bloodstream infections. [11] In particular, bloodstream infections with the extended-spectrum beta-lactamase and the carbapenemase-producing Gram-negative bacteria pose significant issues as these pathogens are resistant to empirical therapy for febrile neutropenia (which is commonly a broad-spectrum cephalosporin-based regimen with an anti-pseudomonal cover). [12] Increased mortality risk with these multi-resistant organisms is related to delays in delivering appropriate antibiotic therapy. [13] Indeed, we observed one case of bloodstream infection caused by an extended-spectrum beta-lactamase producing Gram negative bacteria, in which the patient remained febrile after 48 hours of empirical therapy with piperacillin/tazobactam, prompting the switch to a carbapenem-based therapy, allowing an adequate antimicrobial cover (luckily the isolate did not harbor a carbapenemase-producing bacteria as well). Antimicrobial stewardship and adequate infection control measures are required to prevent further problems with multi-resistant organisms, which has been an initiative worldwide today, including in Australia. [14]

Reflections on the elective placements

An elective placement will not be complete without reflecting on what I have learnt whilst there to make me a better doctor in the future.

First, I have come to truly appreciate the importance of research in clinical medicine. Research, both laboratory-based and clinical, provides the essential foundation of what we know at present of diseases and their appropriate management. As an intern candidate sitting interviews in two months time, the way I view my research involvement has been affirmed – it is no longer merely a ‘selling point’ in my curriculum vitae, rather it is something I am truly proud of – it is a contribution to humanity which I certainly would like to keep up. Haematology, in particular, is a very active field of scientific enquiry. In both centres I attended, there are numerous clinical trials that are still actively recruiting patients at the time this article is written. In recent years, ‘targeted therapy’ and ‘immunotherapy’ have taken the centre stage and my experience with ruxolitinib described above is one example.

Secondly, good communication skills are crucial for best patient care, especially in haematology. In such a discipline with high throughput of novel, potentially superior therapy, at times quality of life may be neglected (unintentionally) for ‘overall survival’, which is often used as a measure of treatment success. A career in haematology hence requires the ability of not only to offer hope via new therapy, but also to limit further suffering by the same token. Taking the time to empathically listen to patients’ wishes is very important, along with careful considerations on the potential benefit and side effects of the therapy on offer.

The natural history of malignant haematological disorders often alternates between periods of remission and relapse – at which a new treatment modality is usually offered. However, it is not uncommon that these ‘salvage therapies’ are offered on a clinical trial basis, where there is an uncertainty of whether or not we are doing more good than harm. Numerous times I had observed careful, empathetic listening followed by the question ‘is this what you really want?’ which revealed the true desire of our patients – that they prefer to embrace the time that remains free of side effects (nausea and fatigue are common ones) and are able to treasure their loved ones with minimal medical interventions. In such cases, close liaison with palliative care services is crucial in ensuring that we always act in our patient’s best interest. Having learnt this firsthand observing the consultants I had worked with in my electives, I most certainly will remember to put my patients’ (true) wishes first in my future practice.

So you want to be a haematologist (in Australia)?

There are three training pathways available in the Australian system (Figure 1). I will briefly discuss the joint RACP/RCPA training pathway here as it is the most commonly chosen pathway, and was the only pathway the registrars I worked with had undertaken. [15]

43

Figure 1. Haematology Training Pathways in Australia. Haematology affords a wide range of career options and subspecialties depicted here are by no means exhaustive. Please refer to www.racp.edu.au and www.rcpa.edu.au for a comprehensive overview of these training pathways.

After completing their Basic Physician Training (BPT) program, candidates are eligible to apply for the joint RACP/RCPA accreditation in haematology. This involves the completion of four years of advanced training in haematology, usually comprised of two years each of clinical and laboratory training (minimum requirements of two years and one year in laboratory and clinical haematology training, respectively). [15]

In addition to the RACP written and clinical examinations taken in the final year of BPT, joint accreditation trainees are required to complete the RCPA haematology part I and part II pathology examinations after at least 18 months of accredited laboratory training. [15] The part I examination includes written, morphology, ‘wet’ and ‘dry’ practical examinations plus a viva, while the part II examination includes a dissertation and a viva. Hence, those considering haematology as a vocation should take this component of the training into consideration – there will be pathology exams!

Pathways that follow to ‘consultanthood’ vary, with many fledgling haematologists pursuing further training through fellowship appointments or a Doctor of Philosophy degree (PhD). As a result, haematology affords a wide range of career destinations and many subspecialisations (Figure 1). Those who choose to work as a clinical haematologist provides inpatient and outpatient care, whilst laboratory haematologists hold supervisory role in accredited laboratories. Finally, private practice is also very common in Haematology, allowing for flexibility in matching vocational aspirations with personal pursuits.

For a more comprehensive overview of these training programs, please refer to the RACP (www.racp.edu.au) and RCPA (www.rcpa.edu.au) websites.

In summary, haematology is an attractive specialty as in many cases the haematologist has the satisfaction of seeing a patient clinically, making a diagnosis by looking at his/her patient’s blood and finally, offering appropriate treatments. Aligned with a previously published British article by O’Connor and Townsend [16], I think we agree that Haematology is, definitely, a specialty worthy of consideration.

Acknowledgements

None.

Conflict of interest

None declared.

Correspondence

A Tedjaseputra: adityat@student.unimelb.edu.au

References

[1] Haematology – Advanced Training Curriculum – Adult Medicine Division/Paediatrics & Child Health Division. Sydney, New South Wales: The Royal Australasian College of Physicians; 2013.

[2] Hoffbrand AV, Moss PAH. Essential Haematology. 6 ed. Hoffbrand AV, Moss PAH, editors. West Sussex, UK: Wiley-Blackwell; 2011.

[3] Olivia Newton-John Cancer & Wellness Centre: About Us Melbourne, Australia: Austin Health; 2015 [cited 2015 19 March]. Available from: http://www.oliviaappeal.com/About-Us.aspx.

[4] Stone MJ. Thomas Hodgkin: medical immortal and uncompromising idealist. BUMC Proceedings. 2005;18:368-75.

[5] Klampfl T, Gisslinger H, Harutyunyan AS, Nivarthi H, Rumi E, Milosevic JD, et al. Somatic mutations of calreticulin in myeloproliferative neoplasms. N Engl J Med. 2013;369(25):2379-90.

[6] Harrison C, Kiladjian J-J, Al-Ali HK, Gisslinger H, Waltzman R, Stalbovskaya V, et al. JAK Inhibition with ruxolitinib versus best available therapy for myelofibrosis. N Engl J Med. 2012;366(9):787-98.

[7] Verstovsek S, Mesa RA, Gotlib J, Levy RS, Gupta V, DiPersio JF, et al. Efficacy, safety, and survival with ruxolitinib in patients with myelofibrosis: results of a median 3-year follow-up of COMFORT-I. Haematologica. 2015;100(4):479-88.

[8] Vannucchi AM, Kiladjian JJ, Griesshammer M, Masszi T, Durrant S, Passamonti F, et al. Ruxolitinib versus standard therapy for the treatment of polycythemia vera. N Engl J Med. 2015;372(5):426-35.

[9] Lingaratnam S, Slavin MA, Koczwara B, Seymour JF, Szer J, Underhill C, et al. Introduction to the Australian consensus guidelines for the management of neutropenic fever in adult cancer patients, 2010/2011. Australian Consensus Guidelines 2011 Steering Committee. Intern Med J. 2011;41(1b):75-81.

[10] Freifeld AG, Bow EJ, Sepkowitz KA, Boeckh MJ, Ito JI, Mullen CA, et al. Clinical practice guideline for the use of antimicrobial agents in neutropenic patients with cancer: 2010 update by the infectious diseases society of america. Clin Infect Dis. 2011;52(4):e56-93.

[11] Blijlevens NM, Donnelly JP, De Pauw BE. Mucosal barrier injury: biology, pathology, clinical counterparts and consequences of intensive treatment for haematological malignancy: an overview. Bone Marrow Transplant. 2000;25(12):1269-78.

[12] Tam CS, O’Reilly M, Andresen D, Lingaratnam S, Kelly A, Burbury K, et al. Use of empiric antimicrobial therapy in neutropenic fever. Australian Consensus Guidelines 2011 Steering Committee. Intern Med J. 2011;41(1b):90-101.

[13] Mikulska M, Viscoli C, Orasch C, Livermore DM, Averbuch D, Cordonnier C, et al. Aetiology and resistance in bacteraemias among adult and paediatric haematology and cancer patients. J Infect. 2014;68(4):321-31.

[14] Gottlieb T, Nimmo GR. Antibiotic resistance is an emerging threat to public health: an urgent call to action at the Antimicrobial Resistance Summit 2011. Medical Journal of Australia. 2011;194(6):281-3.

[15] Advanced Training in Haematology Sydney, New South Wales, Australia: The Royal Australasian College of Physicians; 2015 [cited 2015 April 25].

[16] O’Connor D, Townsend W. A career in haematology. [Internet]. London: British Medical Journal; 30 Dec 2009. [cited 2015 31 May]. Available from: http://careers.bmj.com/careers/advice/view-article.html?id=20000625#

Categories
Feature Articles

Medical humanities and narrative medicine

Medicine is both an art and a science. While modern medical training teaches the scientific and technical aspects of medicine well, the humane aspects of medical education remain relatively neglected at university level in Australia. “Medical humanities” and “narrative medicine” have been proposed as solutions to correct this imbalance. The inter-disciplinary field of “medical humanities” brings the perspectives of academic disciplines within the humanities to bear on medical practice. “Narrative medicine” teaches us how to hear our patients’ stories and how to respond to
them. These approaches provide crucial opportunities to develop attention to narrative, critical thinking and empathy, and thus to deploy the scientific tools of medicine more wisely.

“The art of tending to the sick is as old as humanity itself.”

 ~ Goldman Cecil’s Medicine [1]

41The practice of medicine is both an art and a science. Both aspects require due attention, but throughout my
university medical training it always seemed clear that scientific and technical topics were considered more important. After all, they received the majority of attention in the curriculum, and were more thoroughly examined. Important topics such as bioethics, social determinants of health, and the history and philosophy of medicine were balanced precariously at the periphery of our studies or even absent from the core curriculum.

Modern medical training emphasizes the scientific, technical and practical. Although patient communication, empathy and professionalism are rightfully given prominent places in modern medical school curricula, these are approached in typically pragmatic fashion – for example, how might one convey the impression of interest to a patient? We learn how to sit, how often to nod, when to make eye contact, and what we might say to appear to be listening. The evidence of my patient communication tutorials is scribbled in the margin of my first year textbook: “I see …”, “please go on …”, and “mm-mm …”. We learn this by rote, like everything else. This is an excellent place to start. But why bother at all? Mostly, we talk in terms of establishing rapport, taking better medical histories and improving the end results for our patients. However we never discussed the bigger questions that underlie all this effort to appear caring, for example, how to stimulate and sustain genuine interest in the endless stream of people we will meet as patients, let alone why we seek to relieve suffering or value human life at all.

From my own experience as a student, peer reviewing reflective essays or participating in tutorial discussions, the result of this heavily unbalanced emphasis is that medical students think no more subtly about important ethical issues in medicine than the typically hackneyed discussions one reads in the newspapers. This is despite our experiences with doctors and patients everyday in clinic and hospitals, for whom these are not abstract issues. For example, when discussing dilemmas encountered by doctors who are religious, someone may always be relied upon to pipe up with the peculiar remark that doctors ought to leave their personal values at home and not bring them to work – as if the doctor with no values was anything other than monstrous to contemplate. Why aren’t we able to transform this abundance of clinical experiences into better thinking on “big” questions? This mediocrity in critical thinking and imagination is dangerous for both our future patients and ourselves. However, the issue is larger than simply a lack of time for bioethics in the curriculum. The loss of space in the curriculum for this endeavor is but one manifestation of the lack of importance accorded to the humanities as a whole in medical training.

“Medical humanities” and “narrative medicine” have proposed themselves as solutions to this lack of the humane in modern medicine, to balance its increasing focus on the reductionist and scientifically technical. [2-3] Here I address the question of what it means to recover the sense of our profession as a humane art, especially via narrative medicine.

What are the medical humanities and narrative medicine?

Training in narrative medicine and medical humanities now forms part of the core curriculum at more than half of all North American medical schools. [4] However, despite the considerable influence of these fields in Europe and America, the concepts remain little known in Australia. “Medical humanities” refers to the interdisciplinary fields created when the perspectives of the humanities, social sciences and the arts, such as literature, history, music, languages, theology and fine art are brought to bear on medical practice and other areas relevant to healthcare. [5]

“Narrative medicine” in turn belongs within the wider field of the medical humanities. It is more than simply the observation that patients and their illnesses have stories, but this simple statement is where it all begins. The field of narrative medicine grew out of the work of physician Rita Charon who formally defined “narrative medicine” as medicine practised with “narrative competence”, that is, “competence to recognize, interpret, and be moved to action by the predicaments of others”. [6] Elsewhere, Charon describes narrative medicine more simply as “medicine practised by someone who knows what to do with stories”. [7] Training of medical professionals in this field teaches the application of formal literary theory and creative writing skills to the situations and interactions commonly encountered in medicine, as well as various interpersonal skills. To this end, the narrative medicine program directed by Charon at Columbia University trains participants in “close reading, attentive listening, reflective writing, and bearing witness to suffering”. [7]

One way of understanding about how to “do” narrative medicine is conceived in terms of three “movements” – attention, representation and affiliation. [7] Attention refers to the skill, when in the presence of our patients, of absorbing as much as possible about their condition. We recognize this as what we do during the observation phase of physical examination, for example. Representation refers to the act of writing about patients and our clinical experiences, “taking chaotic or formless experiences and conferring form”, for example as prose or poetry, a piece of written dialogue, or even as an obituary. This process creates meaning from our experiences. Finally, affiliation refers to “authentic … connections between doctor and patient”.

First movement: attention

Observation is the first step in any medical examination, and all-too easily overlooked when one is learning. All medical students soon develop some favourite trick for overacting this step during OSCEs, to impress our keen skills of observation upon the examiners. But how is one really to develop this skill? The obvious answer is by practice and experience with observation of real patients on the wards – learning to see the walking aids, asthma puffers, sputum containers, hearing aids and every other manner of salient item in the jumble of medical equipment and personal items at the patient’s bedside.

However, it is also possible to practice the skills required for observation in medical contexts in other settings, such as art galleries and museums. This approach was developed at U.S. medical schools, to teach skills such as objective observation, communication, disagreeing respectfully with peers and managing ambiguity. At the University of Melbourne, a method first developed at Harvard University (“Training the Eye”) is being used at the university’s Ian Potter art gallery for improving the observation skills of medical and dental students. [8] This program is based on the hypothesis that the process of understanding a complex, narrative-based painting requires many of the same skills as required for medical diagnosis. Access to this training is not routine for medical students, but can be sought out in elective sessions at the medical school’s annual student conference. In one such session, we used the wonderfully intriguing painting “Bushrangers”, painted by William Strutt in 1852. It is not immediately clear that the painting involves a highway robbery in what is now downtown St Kilda in Melbourne; drawing this inference requires deliberate searching through the painting’s details and debate about the significance of aspects of the painting with others. This approach has been shown substantially to improve the observation skills of medical students. [9] It is useful not only for observing our patients, but for a variety of other situations, such as understanding medical imaging and communicating our findings to colleagues and patients.

Second movement: representation

A crucial aspect of narrative medicine is learning to write about one’s practice and patients. Opportunities to develop this skill begin during medical school with reflective writing exercises about our clinical experiences and patient encounters. Another way to improve one’s own writing, apart from regular practice through reflective writing, is to read published examples of this kind of writing, of which endless excellent examples by both doctors and patients are available.

The genres of narrative medicine have been classified in various ways. One simple classification recognizes four different genres. [10] Firstly, there are the classic illness narratives that patients write about being sick, and which might include surrounding circumstances explaining how they were diagnosed, how they were treated, how they coped and the impact it had on them and their families.  An excellent, recent Australian contribution to this genre is Myfanwy and Donald Horne’s experience of Donald’s palliative care for chronic obstructive pulmonary disease (COPD), and the aftermath, chronicled in, “Dying: a memoir”. [11] Helen Garner’s “Spare Room” is an interesting Australian variation on the patient memoir, written from the perspective of a concerned friend. [12] “The diving bell and the butterfly”, Jean-Dominique Bauby’s compelling memoir of locked-in syndrome, is a classic in the genre. [13]

Secondly, many doctors write about their experiences of caring for their patients. Many will be familiar with the thoughtful writing of the Melbourne-based oncologist, Ranjana Srivastava, both in her regular newspaper column and her books, such as “Tell me the truth: conversations with my patients about life and death.” [14] The delightful books of Oliver Sacks, detailing the curious cases he encountered in his long practice as a neurologist, such as “The man who mistook his wife for a hat” also belong within this genre. [15] “The hospital by the river: a story of hope” by Catherine Hamlin about establishing the Ethiopian fistula hospital with her husband is a must-read for Australian medical students [16]; I found a copy on the midwives’ shelves during my obstetrics term and read it late at night between calls to labour suite. There are memoirs at all level of practice; the notorious memoir of life as a junior doctor in an American hospital, “House of God”, is by now legendary, along with its questionable additions to the medical vocabulary. [17]

Thirdly, there are doctor-patient narratives. These are narratives which show how not only the patient’s perspective on their illness, but also how their experience of illness was affected by the interaction with their doctor. These make us aware of how our reactions to patients and explanations of their symptoms can affect a patient’s understanding and experience of their illness. These narratives form in the interplay between doctor and patient in the taking a history, and in forming a diagnosis. Both the doctor and patient will begin to form stories about the illness in this process, which will necessarily be changed by the therapeutic encounter. This might be observed, for instance, when a newly diagnosed patient commonly asks whether anything might have been done to prevent their illness – did they do something to cause it – are they somehow to blame?

Lastly, we need to be aware of meta-narratives, which are the grand, over-arching stories our societies and cultures tell about illness and health, and which provide a framework within which we conceive and construct our own stories. A classic work in this area is Susan Sontag’s seminal “Illness as metaphor”, which examines the power of metaphor and myth in cancer, and was written during her own experience (we will not say “battle”) with cancer. [18] Arthur Frank’s “The Wounded Storyteller” is likewise a seminal text, as a collection of essays discussing the roles and limitations of different categories of illness narratives, and written in light of the author’s own experience of serious illness. [19] Jonathon Miller, although understandably better known for his influential stage production of Gilbert and Sullivan’s The Mikado starring an operetta-singing Eric Idle as Ko-Ko, was also a neurologist. His multi-series documentary and book “The body in question” is another influential endeavor in the genre of medical metanarrative, dealing as it does with metaphors of illness, and cultural ideas about the body. [20]

Third movement: affiliation

How then does one “do” narrative medicine in daily medical practice? The most important element in building the required therapeutic affiliation with patients in narrative medicine is “a specific openness to towards patients and their narratives”. [10] Charon notes that when she began to try this approach with her own patients, she asked only one question during the initial consultation: “I have to learn as much as I can about [your] health. Could you tell me whatever you think I should know about your situation?”. [21] While most of us would worry about the extra time it would take in a consultation if patients were allowed to speak without direction, one study showed that two minutes was long enough in General Practice for 80% of patients to explain all of their concerns, if the doctor was trained in active listening and even if the patients had complex medical concerns. [10] Nevertheless, ensuring that a consultation with a patient “meets both narrative and normative requirements” is unquestionably difficult and requires training and daily practice. [22]

Proponents of narrative medicine argue that literature is an important way to develop the narrative mindset for medical practice of this kind. The touted benefits to doctors of reading “good books” include that reading offers a wider experience of life than one may encounter in the everyday of a single lifetime. [23] The narrative perspective, it is claimed, also has the potential to develop the imagination on which empathy depends, by crossing barriers into the inner lives of others in a way that is not possible in real life, even with the unique insights into others’ lives provided by medical practice. [23] It is also said that literature can also refine moral perception, and teach one to manage with ambiguity and paradox. [24] However, despite these optimistic expectations, medical students have proven resistant to the projected benefits of reading for this purpose. The obviously frustrated authors of one study document students refusing to participate in their carefully prepared class (“the literature we selected would have made Tolstoy proud”). They had hoped to discuss passages from novels covering themes such as illness, family violence race, gender, social class and sexual identity. [25] The students responded in a way that will be familiar to any of us who have attended classes on topics commonly deemed by the student body to be “fluffy” – questioning the basis of the class, not taking it seriously, treating presenters with disrespect and even not attending the class. Some of this resistance is laudable – the impatience of the practically-minded for weasel words and time wasting, and a weariness with endless jostling to advertise various medico-political agenda within our curriculum. However, it is also likely that the resistance arose, as the authors suggested, from a refusal to persist with uncomfortable topics which also ask a group of students who see themselves as triumphant meritocrats to reflect on the undeserved social advantages that have enabled them to study medicine at all.

Conclusion

Much has been claimed for the benefits of narrative medicine. However, writers in the field caution against over emphasizing the artificial dichotomies of humanities versus the sciences, the subjective versus the objective, the clinical and reductionist versus the human and holistic. [26,27] Competent medical practice necessarily requires compassion and imagination, and cannot avoid “big” questions such as the nature and meaning of pain, suffering and death. However, a doctor who is able to respond usefully to these fundamental questions requires training and skills beyond the merely technical and scientific. Other potential benefits suggested for this approach include the preservation of empathy throughout medical training, reduced doctor burnout, exhaustion and disillusionment, and better outcomes for our patients. [4]

How can we learn narrative medicine? At medical school, this might be about making time to read widely and explicitly resisting the pressures towards reductionism and technical focus. Another important way to preserve and develop narrative sensibilities is by writing about our own clinical experiences and patients. An obvious example in this respect is simply to take reflective writing opportunities seriously, and to expect high standards of writing from others when asked to give peer feedback. For junior doctors, opportunities for joining Balint groups at hospitals or during GP training are also becoming more widespread. These small groups meet to present and discuss cases from members’ own practice, with focus on narrative, the doctor-patient relationship, and self-reflection. [28] However, the options in Australia for formal academic training in the humanities, as a medical student or doctor, are limited. The only explicit university program in medical humanities in Australia is at the University of Sydney, which offers “health humanities” as a specialization in the Masters or Graduate Diploma of Bioethics. [29] Another option is attendance at shorter workshops that overseas institutions offer from time to time, and which we might seek out during study leave. The most well-established of these are those offered at mid-year at the University of Columbia Medical Center in the U.S. [30]

Medicine practiced without attention to the humane has the potential to harm both our patients and ourselves. While science provides us with safe, effective tools to deploy in medical practice, the humanities teach us how to use them wisely. [31] Currently, university medical training focuses on the former, with limited opportunities to develop the attention to narrative, critical thinking and empathy which help us to develop wisdom in response to clinical experience. Oliver Sacks summaries this aptly, “With the rise of technological medicine and all its wonders, it is equally important to preserve the personal narrative, to see every patient as a unique being with his own history and strategies for adapting and surviving. Though the technical terms may evolve and change, the phenomenology of human sickness and health remains fairly constant …” [15]

References

[1] Goldman L, Schafer AI. Cecil Medicine: Elsevier Health Sciences; 2011. p2.

[2] Hooker C. The medical humanities: a brief introduction. Aust Fam Physician. 2008;37(5):369-70.

[3] Charon R. Narrative medicine – A model for empathy, reflection, profession, and trust. JAMA. 2001;286(15):1897-902.

[4] Divinsky M. Stories for life: introduction to narrative medicine. Can Fam Physician. 2007;53(2):203-5, 9-11.

[5] Gordon J. Medical humanities: to cure sometimes, to relieve often, to comfort always. Med. J. Aust.. 2005;182(1):5-8.

[6] Charon R. Narrative medicine: Form, function, and ethics. Ann. Intern. Med. 2001;134(1):83-7.

[7] Charon R. What to do with stories – The sciences of narrative medicine. Can Fam Physician. 2007;53:1265-7.

[8] Gaunt H. Medicine and the arts: Using visual art to develop observation skills and empathy in medical and dental students. University of Melbourne Collections. December 2012(11).

[9] Naghshineh S, Hafler JP, Miller AR, Blanco MA, Lipsitz SR, Dubroff RP, et al. Formal art observation training improves medical students’ visual diagnostic skills. J Gen Intern Med. 2008;23(7):991-7.

[10] Kalitzkus V, Matthiessen PF. Narrative-based medicine: potential, pitfalls, and practice. Perm J. 2009;13(1):80-6.

[11] Horne D, Horne M. Dying: A memoir. Melbourne: Penguin; 2007. 276 p.

[12] Garner H. The Spare Room: A Novel. New York: Henry Holt and Company; 2009. 192 pp.

[13] Bauby JD. The Diving Bell and the Butterfly. New York: Random House; 1997. 131 p.

[14] Srivastava R. Tell Me the Truth: Conversations with my Patients about Life and Death. Melbourne: Penguin; 2010. 320 p.

[15] Sacks O. The Man Who Mistook His Wife For A Hat: And Other Clinical Tales. New York: Simon & Schuster; 1998. 243 p.

[16]]    Hamlin C, Little J. The Hospital by the River. Sydney: Pan Macmillan; 2008. 308 p.

[17] Shem S. The House of God: A Novel. New York: R. Marek Publishers; 1978. 382 p.

[18] Sontag S. Illness as Metaphor: Farrar, Straus and Giroux; 1978. 87 p.

[19] Frank AJ. The Wounded Storyteller: Body, Illness, and Ethics. 2nd ed. Chicago, U.S.: University of Chicago Press; 2013.

[20] Miller J. The body in question. London: Jonathan Cape; 1978. 352 p.

[21] Charon R. Narrative and medicine. N. Engl. J. Med.. 2004;350(9):862-4.

[22] Launer J. New stories for old: Narrative-based primary care in Great Britain. Fam Syst Health. 2006;24(3):336-44.

[23] Bolton G. Medicine and literature: writing and reading. J Eval Clin Pract. 2005;11(2):171-9.

[24] Ahlzen R. The doctor and the literary text–potentials and pitfalls. Med Health Care Philos. 2002;5(2):147-55.

[25] Wear D, Aultman JM. The limits of narrative: medical student resistance to confronting inequality and oppression in literature and beyond. Med Educ. 2005;39(10):1056-65.

[26] Charon R, Wyer P. Narrative evidence based medicine. Lancet. 2008;371(9609):296-7.

[27] Gordon J. Arts and humanities. Med Educ. 2005;39(10):976-7.

[28] Benson J, Magraith K. Compassion fatigue and burnout: the role of Balint groups. Aust Fam Physician. 2005;34(6):497-8.

[29] The University of Sydney. sydney.edu.au/medicine/velim/pgcoursework/medicalhumanites.php 2002-2015 [cited 15 May 2015].

[30] Columbia University Medical Center. www.narrativemedicine.org/workshops.html 2015 [cited 15 May 2015].

[31] Gordon JJ. Humanising doctors: what can the medical humanities offer? Med. J. Aust. 2008;189(8):420-1.

Categories
Feature Articles

Medical futility: The struggle to define an ancient concept in a modern clinical context

At face value the word futility is deceptively simple, inviting synonyms such as useless, pointless, and ineffective. [1] The concept is not new, with Hippocrates espousing the importance of avoiding futile treatment measures over two thousand years ago: “Refuse to treat those who are over-mastered by their disease, realising that in such cases medicine is powerless.” [2] It was not until the 1980s that the term “medical futility” began to receive significant attention in the medical literature. [3,4] Despite several decades of debate and hundreds of articles dedicated to the subject, the concept of medical futility remains ambiguous. [4,5] Several competing concepts and definitions have been proposed, however each of these has been subject to criticism and has ultimately failed to produce significant agreement. Increasingly, the philosophical definition of futility is proving inconsequential when applied in a clinical context. Ongoing attempts to reach a consensus distract from more significant practical issues. These include resource rationing and how best to manage conflict over patient demands for treatments that healthcare providers deem to be medically inappropriate. [5,6]

Back to basics40

The Oxford Dictionary definition of futility is seemingly straightforward, defining futile as “incapable of producing any useful result; pointless”. [7] Deeper consideration reveals that not only is futility by this account difficult to quantify with certainty, it is also extremely subjective and value-laden. [8] Given the capacity for humans to occasionally defy medical odds it is almost impossible to declare with complete confidence that a treatment is “incapable of producing any useful result”. Ewer proposes that “in seeking a universal definition of medical futility, we may be drawing an arbitrary line in a continuum; we seek the comfortable position of declaring futility exists or does not, and we cannot always make that determination”. [9] The inability to reach a universal understanding of futility despite several decades of discussion in the literature supports this assertion that futility definitions are inherently arbitrary.

Further complicating the debate is the lack of consensus as to which group of patients the concept of futility applies. Theoretically, futile treatment could be used to describe any intervention that is performed without being medically indicated. [3] Overall however, the medical literature generally considers a more limited application of futility as it applies to life-sustaining treatments. [3] Some authors argue that defining futility in the context of end-of-life measures unnecessarily clouds the debate with emotion and is partly responsible for the confusion surrounding its meaning. [10]

Paternalistic origins

While the definition of futility is often cited as the point of contention, the central issue in the futility debate is actually the authority and role of doctors in making decisions to withhold or withdraw treatment. [3] Original attempts to define medical futility aimed to provide a clear legal and ethical framework within which doctors could reasonably deny or withdraw medical therapy based solely on clinical indications for treatment, irrespective of patient preferences. [3,6] Doctors were given the power to make abstention decisions over the objections of competent patients based on their medical expertise. Unsurprisingly, this concept of medical futility drew heavy criticism on the basis that it invites medical paternalism and the imposition of doctors’ personal values on patients. [3]

Physiological futility

The concept of futility was subsequently revised to that of “physiological futility”. According to this definition, a futile treatment is one that is incapable of achieving its intended biological aim. [4,6] The medical expertise of doctors was still given central importance, but this definition aimed to remove subjective quality-of-life judgements from the decision-making process and provide an objective account of medical futility. [3,11] Prognostic scoring systems were touted as a means of substantiating futility assessments through empirical data. [3] The physiological futility model also drew criticism as it failed to account for individual deviations in predicted outcome (i.e. the patients that “defy the odds”). [3] Furthermore, subjective assessment still exists, as data supplied by prognostic scoring systems requires interpretation and integration with subjective evaluations to be applied to the individual patient. [3]

Quantitative and qualitative futility

Contributions by Schneiderman et al. in the early 1990s introduced the concepts of qualitative and quantitative futility into the debate. Schneiderman quantified a level at which abstention decisions could be justified, proposing that an intervention is quantitatively futile when: “physicians conclude (either through personal experience, experiences shared with colleagues or consideration of reported empiric data) that in the last 100 cases, a medical treatment has been useless.” [12] Opposition to the quantitative futility definition (and indeed any definition based on prognostic scoring systems) centres on the idea that such definitions create “self-fulfilling prophecies”. [6] If life-sustaining treatments are denied because of an anticipated high probability of death, the subsequent observed mortality rate will be artificially increased. [6]

Schneiderman went on to state that “any treatment that merely preserves permanent unconsciousness or that fails to end total dependence on intensive medical care should be regarded as nonbeneficial and, therefore, futile”. [12] In proposing a quality-of-life based minimum standard against which futility could be measured the authors present the concept of qualitative futility as an alternative to quantitative futility. [3,4]

Procedural approach to futility

The procedural approach to futility moves away from semantics, focussing instead on the processes by which ethical arguments are addressed. This emphasis on procedure over terminology emerged as it became apparent that reaching consensus on a futility definition was unrealistic. [3,4] The procedural approach promotes the establishment of processes and strategies aimed at minimising conflicts and resolving disputes related to medical futility. The utility of this method led to its adoption by a number of hospitals and endorsement by the American Medical Association [4]: “Since definitions of futile care are value laden, universal consensus on futile care is unlikely to be achieved. Rather, the American Medical Association Council on Ethical and Judicial Affairs recommends a process-based approach to futility determinations.” [4,13] Also known as the “due process approach”, this model avoids defining criteria for denying or withdrawing treatment. [6] Instead disputes around delivery of medically futile treatment are generally referred to a third party or ethics committee. [6] Unsurprisingly, this definition has also come under scrutiny for its inherent bias, as these committees are traditionally largely comprised of medical practitioners. [6]

Futility vs. rationing

Of increasing importance in the futility debate is the distinction between the terms futility and rationing. Futility questions whether a proposed treatment will work, whereas rationing questions the cost-versus-benefit of an intervention. [4] In the current health context of advancing treatment modalities and finite funding, attention is shifting away from defining futility and towards specifying a reasonable and appropriate level of care. [9]

The language of futility is also changing to reflect this shift in values towards a rationing emphasis. The Australian Medical Association supports the need to evaluate costs and benefits, stating: “Treatment is futile when it is no longer providing a benefit to a patient, or the burdens of providing the treatment outweigh the benefits.” [14] Wilkinson et al. argue propose that “medically inappropriate” is a preferable term to futility as it makes clear the fact that it is a value judgement made by doctors and avoids the “pseudo-objectivity” conveyed by the word “futile”. [6] This explanation, coupled with the procedural approach’s emphasis on communication and negotiation to resolve disputes, arguably offers the most useful account of medical futility in the current health context.

A suggested approach to futility for clinicians

In the absence of a medical consensus on the definition of futility, McCabe and Storm suggest contemplating the following questions when deciding if a treatment is futile:

  1. The goal of the treatment in question
  2. The likelihood of achieving treatment goal(s)
  3. The risks, costs and benefits to the patient of pursing the intervention, compared with the alternatives
  4. The individual needs of the patient [15]

When doctors and patients disagree about treatment futility, the American Medical Association promotes the following seven steps to resolve the conflict:

  1. Earnest attempts should be made in advance to deliberate over and negotiate prior understandings between patient, proxy, and physician on what constitutes futile care for the patient, and what falls within acceptable limits for the physician, family, and possibly also the institution.
  2. Joint decision-making should occur between patient or proxy and physician to the maximum extent possible.
  3. Attempts should be made to negotiate disagreements if they arise, and to reach resolution within all parties’ acceptable limits, with the assistance of consultants as appropriate.
  4. Involvement of an institutional committee such as the ethics committee should be requested if disagreements are irresolvable.
  5. If the institutional review supports the patient’s position and the physician remains unpersuaded, transfer of care to another physician within the institution may be arranged.
  6. If the process supports the physician’s position and the patient/proxy remains unpersuaded, transfer to another institution may be sought and, if done, should be supported by the transferring and receiving institution.
  7. If transfer is not possible, the intervention need not be offered.  [16]

Conclusion

Ultimately the definition of futility has little relevance in the current healthcare climate. With continued advances in the ability of expensive medical interventions to keep people alive, a distinction must be drawn between what can be done and what should be done. Whether it is philosophically agreeable or not, futility and rationing are inextricably linked in a practical medical sense. In the current health context, the pertinent issue is now how best to manage requests by the public for medically inappropriate treatment. Successful strategies are those that minimise conflict, promote dialogue, and shared goal setting while supporting patients and their families when the limits of care have been reached.

Acknowledgements

None.

Conflict of interest

None declared.

Correspondence

K Haworth: kobihaworth@gmail.com

References

[1] Roget’s 21st century thesaurus. [Internet]. 3rd ed. Philip Lief Group; 2009. Futile. [cited 2012 Jul 13]. Available from: http://thesaurus.com/browse/futile

[2] Whitmer M, Hurst S, Prins M, Shepard K, McVey D. Medical futility: a paradigm as old as Hippocrates. Dimens Crit Care Nurs. 2009;28(2):67-71.

[3] Moratti S. The development of “medical futility”: towards a procedural approach based on the role of the medical profession. J Med Ethics. 2009;35(6):369-72.

[4] Burns JP, Truog RD. Futility: a concept in evolution. Chest. 2007;132(6):1987-93.

[5] Trotochaud K. CE: “Medically futile” treatments require more than going to court. Case Manager. 2006;17(3):60-4.

[6] Wilkinson DJC, Savulescu J. Knowing when to stop: futility in the ICU. Curr Opin Anaesthesiol. 2011;24(2):160-5.

[7] Oxford dictionaries. [Internet]. Oxford University Press; 2010. Futile. [cited 2012 Jul 13]. Available from: http://oxforddictionaries.com/definition/english/futile

[8] Nelson SN. “Do everything!”: encountering “futility” in medical practice. Ethics Med. 2003;19(2):103-13.

[9] Ewer MS. The definition of medical futility: are we trying to define the wrong term? Heart Lung. 2001;30(1):3-4.

[10] Chwang E. Futility clarified. J Law Med Ethics. 2009;37(3):487-95.

[11] Youngner SJ. Who defines futility? JAMA. 1988;260(14):2094-5.

[12] Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: its meaning and ethical implications. Ann Intern Med. 1990;112(12):949-54.

[13] Council of Ethical and Judicial Affairs. Medical futility in end-of-life-care. JAMA. 1999;281:937-41.

[14] Australian Medical Association. Position statement on the role of the medical practitioner in end of life care. Australian Medical Association Ltd; 2007.

[15] McCabe MS, Storm C. When doctors and patients disagree about medical futility. J Oncol Pract. 2008;4(4):207-9.

[16] American Medical Association: AMA Opinion 2.037: medical futility in end-of-life care [Internet]. 1997 [cited 2015 Apr 11]. Available from: http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion2037.page?