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doi:10.1111/jpc.12491
REVIEW ARTICLE
Adolescent and young adult medicine is a special and specific area of medical practice Kate Steinbeck,1,2 Susan Towns2,3 and David Bennett2,3 1
The Academic Department of Adolescent Medicine, 3The Department of Adolescent Medicine, The Children’s Hospital at Westmead and 2The Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia
Abstract: Adolescent and young adult medicine is a concept that has gained traction in the last decade or so. The medical literature has come primarily from oncology. Advances in neuroscience that document continuing brain development into the third decade, and research that shows risk behaviours associated with adolescence both remain and may increase in the third decade, have been two of the drivers in the conversation around linking these two age groups together as a medical practice group. A third driver of importance is transition care in chronic illness, where older adolescents and young adults continue to have difficulties making effective linkages with adult care. The case for specific training in adolescent and young adult medicine, including the developmental concepts behind it, the benefits of the delineation and the particular challenges in the Australian health-care system, are discussed. On balance, there is a strong case for managing the health issues of adolescents and young adults together. This scenario does not fit easily with the age demarcations that are in place in acute care facilities. However, this is less the case in community services and can work in focused private practice. Such a situation suggests that both paediatric and adult physicians might be interested in adolescent and young adult medicine training and practice. Key words:
adolescent; AYA medicine; emerging adulthood; health care; young adult.
Adolescent and young adult medicine (AYAM) as a concept has gained significant interest in the last decade or so, with literature support coming primarily from oncology and risk behaviours. This review discusses the age range for adolescent and young adult (AYA), describes the developmental issues related to this age group and considers why the health gains
Key Points 1 Adolescents and young adults share similar developmental and health issues that make sense to place them together when addressing medical care. 2 The health of adolescents and young adults has not improved over the last few decades to the same degree as in younger children and is likely related to patterns of risk behaviour, the prevalence of mental health problems and changing patterns of chronic illness. 3 The challenge for those choosing to work in adolescent and young adult medicine is to develop and evaluate models of care that improve the health of young people both now and into their future. Correspondence: Professor Kate Steinbeck, Medical Foundation Chair in Adolescent Medicine, The Academic Department of Adolescent Medicine, The Children’s Hospital at Westmead, Locked Bag 4001, Westmead, NSW 2145, Australia. Fax: +02 9845 2517; email: kate.steinbeck@health .nsw.gov.au Conflict of interest: The authors declare that they I have no conflicts of interest connected to this paper. Accepted for publication 11 November 2013.
seen in younger children over the last few decades are not replicated in AYA. The current status of AYAM in Australia is reviewed, and suggestions for the development of this specialty are made.
Defining the Age Limits The World Health Organisation defines adolescence as the second decade of life.1 By 10 years of age many children have entered puberty, the major biological event of adolescence. With the age of menarche in Westernised countries falling over the last 100 years,2 some females will have experienced this late pubertal event by the start of their second decade. A recent study demonstrated that the onset of puberty in males is now 1.5 years earlier than boys in the 1970s, with a mean age of 10.14 years.3 The definition of young adult is more contentious.4 Erik Erikson allowed up to 40 years, the end to the ‘prime of life’ and entry into middle age. The sociology literature favours 30 years, as young adults remain dependent for longer on the family of origin and are less likely to have attained the traditional markers of adulthood. Gen Yers (born from early 1980s to mid-1990s) are now young adults and the most globally connected generation, with aspirations and activities differing markedly from those of their parents. In the medical literature, AYA oncology variably includes to the age of 30–40 years.5 We define AYA as 10–24 years – the first year of the third WHO age grouping to the last year of the fifth. Advancing knowledge of neuroscience supports the upper age limit and also fits with the theory of emerging adulthood proposed by J. J. Arnett in 2000 and defined as 18–25 years.6
Journal of Paediatrics and Child Health 50 (2014) 427–431 © 2014 The Authors Journal of Paediatrics and Child Health © 2014 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
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Brain Development A prolonged period of neurological development commences in early adolescence.7,8 There is an initial increase in grey matter with an accompanying increase in synaptic connection. In later adolescence, there is pruning of the synapses so that more effective pathways develop. Increased myelination of the long tracts of the brain between the cortex (particularly the prefrontal cortex) and lower sections of the brain provides more rapid neuro-communication. These universal maturational processes should support behaviour change, with a reduction in impulsivity and the ability to better judge risk and consequences. These cognitive maturation processes are relevant to AYA health, as these relate to health literacy, high-risk decisionmaking (including decisions with long-term health outcomes) and self-management in chronic illness, health service policy and health service planning. The approach with AYA is clearly not to alter biology but to provide interventions that are directed at support or ‘scaffolding’ within the societal mesosystem (family, peers and community).9 The continuing role of family support for emotional and social well-being is important10 but often challenged by issues around autonomy. These mesosytemic influences (relations between microsystems or connections between contexts) are yet to be addressed in hospital systems for AYA. However, empirical health data provide a picture that is somewhat at odds with a smooth, unidirectional progression to maturity. The achievement of the tasks of adolescence is necessary for competent adulthood, but these have become more complex in the 21st century and may contribute to the health issues of emerging adulthood.
Emerging Adulthood and Health Emerging adulthood is associated with deteriorating health and well-being in most prevalent physical and mental health conditions of adolescence. The AYA physician needs to skilfully manage the interface between physical and mental health and health-related behaviours. There are many examples. Young adulthood is a time of increasing weight gain.11 Most overweight and obese adolescents become overweight and obese young adults. Worsening dietary choices and preferences, which commence in adolescence, are reinforced in young adulthood.12 These may set up a cycle for another generation, as young adults become parents and model these health behaviours for their own children. Substance use and misuse, which commence often as adolescent exploratory behaviour, peak in young adulthood.13 There is reinforcement of patterns of coping with chronic illness in young adulthood,14 some of which are suboptimal. The first episode of psychosis often occurs in the third decade15 but may have been preceded by mood and affect disturbance in adolescence. Greater and potentially unhealthy use of the Internet and video gaming use,16 together with worsening of sleep disorders including insomnia and delayed sleep phase may impair health.17 An AYA physician is trained to identify and treat these complex and interrelated health problems better than the organ specific management in adult medicine. Emerging adulthood is clearly a time where health trajectories are consolidated and supports the argument for bringing AYAM together. Adolescents and young adults are not enjoying the 428
health gains that education, vaccination and other advances in medical care have brought to younger children. Morbidity and mortality in adolescents and young adults have failed to reduce at a similar pace,18,19 with unintentional injury being the leading cause of mortality in AYA, injury which is often associated with established risk behaviours and mental health problems.
AYAM as a Specialty In Australia, three hospitals offer adolescent-specific care in a paediatric setting20 and two hospitals offer AYA care in an adult setting.21 In Sydney, these are The Department of Adolescent Medicine at The Children’s Hospital at Westmead, Adolescent Medicine at Westmead Hospital and Adolescent and Transitional Medicine at The Royal Prince Alfred Hospital. In Melbourne, there is the Centre For Adolescent Health at the Royal Children’s Hospital, and Paediatric and Adolescent Medicine at St Margaret’s Hospital in Perth.22 AYAM care is also provided at headspace services (12–25 years). This is a national mental health initiative,23 often co-located with primary health-care services. Community Youth Health Services (12–24 years) also provide age-specific health care for underserved populations, including those who are homeless or at risk of homelessness.24 There are designated adolescent medical specialty clinics for chronic illness in paediatric hospitals and young adult specialty clinics for chronic illness in some adult hospitals. These services have arisen on an ad hoc basis, driven by individuals, rather than by any overarching health policies. NSW Health is the first state to develop a specific Youth Health Policy.25 The Policy’s three major goals are that young people are encouraged and supported to achieve optimal health and well-being, that young people experience the health system as positive, respectful, supportive and empowering and that responses to the health needs of young people are evidence-based, promote prevention and early intervention and are delivered efficiently and effectively. The third goal resonates particularly strongly in the context of the AYAM discussion. At the time of writing, AYAM is not, in Australia, a recognised specialty with a formal training programme. The Royal Australasian College of Physicians, with the assistance if its Joint Adolescent Health Committee, is currently preparing an application for recognition. Some paediatricians who work as adolescent physicians and adult physicians who focus on the young adult age group have also chosen to work within an organ-specific system, whereas others have maintained a more generalist approach. Dual training could be attractive, particularly in medical specialties where there are significant numbers of AYA (diabetes, neurology and gastroenterology).26 The AYAM specialist requires expertise in a developmental model of care, where the interplay of the bio-psychosocial is both acknowledged and dealt with. This flows naturally from the paediatric model where behavioural management work is common, and family and environmental interventions are included. The AYAM specialist may address anxiety, depression, chronic fatigue and other functional and somatising disorders that present significant management challenges,27 interactions with peers and education systems, substance use and other risk behaviours, therapy nonadherence, and concerns related to sexuality and reproductive health. They may also be called upon to interact with and support
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parents. The AYAM specialist may work collaboratively with sub-specialty organ-specific colleagues to obtain a better outcome for the young person’s overall well-being.28 While the medical conditions of young adulthood have much in common with those of adolescence, young adults are managed in a health-care system that is focused on the individual and which expects each patient to be autonomous and to understand the rules of engagement. While adolescents make up 20–25% of patients in paediatric acute care services, young persons aged 12–24 years make up only 6–8% of patients in acute care adult services.29 AYA are thus diluted in larger adult services and are often not strong advocates for their own health care. It has been stated that AYA fall victim to stereotyping around failure to keep appointments and self-management in both paediatric and adult services, although it is hard to find empirical evidence to support this assertion.30
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Non-Communicable Diseases The early appearance of non-communicable diseases, many of which were previously the domain of middle age onwards, also introduces AYA to adult medicine. Hypertension is increasing in prevalence in the AYA age group.40 Where hypertension in AYA was previously due to renal disease, obesity is now a significant cause. Whatever the aetiology of hypertension, the final outcomes of inadequate identification and treatment are cardiovascular disease and end-stage kidney disease (ESKD).41 Both type 1 and type 2 diabetes are increasing in prevalence in AYA. The complications of diabetes, particularly ESKD, appear more rapidly in youth with type 2 diabetes, significantly adding to personal and community costs.42 Females with obesity and prediabetes are at risk for gestational diabetes, which in turn increases the chances of obesity, diabetes and the metabolic syndrome in their offspring.
Transition in Chronic Illness One of the clearest connections in health between paediatric and adult health care, and hence AYAM, is the transition process in chronic illness. Empirical data as to what works best in transition and what are the health cost savings of successful transition in both the short and longer term are lacking.31 In Australia, transition to adult care usually takes place at the end of secondary schooling and which for the majority is in their 19th year, coinciding with other major and perhaps more attractive life transitions. The priorities of AYA are almost certainly different to the priorities that their health providers consider they should have, and which these providers struggle to understand or manage. Examples of young adult services for chronic illness that take into account these transitional priorities include diabetes,32 spina bifida33 and cystic fibrosis.34
Life-Style Transitions There are limited data about the more general life-style transitions and their impact, except perhaps in the college/university literature, which describes one group of AYA.35,36 While for many AYA, the life-style balance sheet remains positive; this may not be the case for vulnerable groups including the homeless, the incarcerated, refugees and immigrants, rural and remote youth, AYA mothers and those with limited social competencies. The life trajectories for all these groups may be severely impaired with much of day to day living spent in survival mode.37 AYAM would have a great deal to offer these under-served populations, who do not easily access traditional models of care.
Models of Care Geriatric medicine has a commonality with AYAM and provides unexpected support for the concept of AYAM as a developmental speciality that functions well in adult health facilities.38,39 In geriatrics, age-specific health issues predominate, and patients are not always good reporters of symptoms and signs. Self-care and decision-making are often compromised, and families are important in decision-making around care. Multidisciplinary team care is an accepted model in geriatrics, as in AYA, and it is this multidisciplinary teamwork that is often not present in adult health-care facilities.
Life-Style and Future Risk The three major precursors of adult morbidity and mortality are tobacco use, overweight and physical inactivity that commonly have their origins in adolescence and young adulthood where life-style habits become entrenched. If a young person starts using tobacco in adolescence, they are likely to become lifelong users.43 It is in adolescence where there is a significant fall in physical activity.44 AYA is a time when intervention in life-style precursors of adult morbidity and mortality need to be addressed in an age-relevant manner. Most empirical evidence for life-style interventions comes from older populations with established morbidity, morbidity which is a significant driver to changing life-styles and morbidity which AYA are yet to overtly develop. The highest levels of binge drinking occur in young adults13 and yet there is little evidence as to how to address this problem. It is young adults who have the legal freedom, autonomy and higher disposable incomes to consume risk levels of alcohol and other substances more frequently and in a culture where it is normative behaviour.
Lessons from Oncology Oncologists played a major role in drawing attention to AYA.45 Theirs was the first medical specialty to provide compelling empirical evidence to treat this age group as both important medically and deserving of specific treatment approaches. Fewer young persons in the AYA group were involved in clinical trials, their overall outcomes were worse than for either younger or older cancer sufferers and their outcomes varied in relation to whether they were treated in paediatric or adult cancer units. The reasons behind these findings are complex and not all are unique to oncology. Oncology turned this situation into an opportunity to create specialist centres for AYA care, which addressed not only the specific cancer treatments but also the developmental needs of this age group. Oncology has started to produce the empirical evidence that AYA cancer outcomes are improving.46 What is now needed is evidence from other treatment groups that AYA outcomes can be improved with AYAM.
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The Necessity of Evidence The failure to make inroads into AYA health, which is occurring in the face of major medical advances, implies the potency of this developmental stage to derail the aspirations and competencies of medical teams. What is lacking is the evidence about what interventions and approaches work best and what constitutes the benchmark for improved AYA care in many situations. The AYAM specialist is someone who can practice confidently and provide expertise in two very different medical cultures, but also someone who can design and carry out quality research studies that support the practice of AYAM. A third attribute is that of educator. It is necessary to address the implied resistance when AYA physicians are viewed as worrying about something out of which young people grow. To the contrary, there are data to back the observation that poorly managed morbidity in adolescence almost invariably carries over into adulthood. AYAM is also necessary because primary care providers cannot be expected to deal with all AYA health problems. The AYA presentations for 15–24 year olds from the Family Medicine Research Centre at the University of Sydney BEACH data show that general practice presentations do not necessarily reflect the major health issues for adolescents. Respiratory illness tops the list, followed by skin, and with psychological disorders constituting less than 10%. Presentations do not always reflect the major concern and long consultations, such as may be necessary for AYA, are often not supported.47
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Conclusion Differing management approaches will be the key to AYAM. AYAM is likely to be at the forefront of personalised medicine, as this age group takes advantage of genomics, metabolomics and nanotechnologies.48 AYA are also likely to embrace newer methods of electronic communication and record keeping. Having responded positively to SMS technology49 and the Internet as therapeutic tools,50 they are likely to embrace electronic personal medical records, given their facility with electronic media. There is work to be done in developing proactive and preventive models of care. One-stop health care imbued with youth friendliness and some service flexibility is also important. Even if young people wish to be active health-care consumers, they may not have personal control over their time away from education and employment and, because of this, they may miss out on necessary health care. Given the increasing longevity of the population, any improvement in AYA health through agespecific health care will be beneficial to the whole community. Recognising the unique health-care needs of the AYA population and providing clinical training and expertise would facilitate prevention, early intervention and long-term management strategies.
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References 1 World Health Organization. Adolescent Development. Available from: http://www.who.int/maternal_child_adolescent/topics/adolescence/ dev/en/ [accessed January 2014]. 2 Ong KK, Ahmed ML, Dunger DB. Lessons from large population studies on timing and tempo of puberty (secular trends and relation
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to body size): the European trend. Mol. Cell. Endocrinol. 2006; 254–255: 8–12. Herman-Giddens ME, Steffes J, Harris D et al. Secondary sexual characteristics in boys: data from the Pediatric Research in Office Settings Network. Pediatrics 2012; 130: e1058–68. Geiger AM, Castellino SM. Delineating the age ranges used to define adolescents and young adults. J. Clin. Oncol. 2011; 29: e492–3. Bleyer A, Barr R, Hayes-Lattin B et al. The distinctive biology of cancer in adolescents and young adults. Nat. Rev. Cancer 2008; 8: 288–98. Arnett JJ. Emerging adulthood. A theory of development from the late teens through the twenties. Am. Psychol. 2000; 55: 469–80. Johnson SB, Blum RW, Giedd JN. Adolescent maturity and the brain: the promise and pitfalls of neuroscience research in adolescent health policy. J. Adolesc. Health 2009; 45: 216–21. Blakemore S-J, Robbins TW. Decision-making in the adolescent brain. Nat. Neurosci. 2012; 15: 1184–91. Philips Smith EFM, Sizer MA. Exploring the meso-system: the roles of community, family and peers in adolescent delinquency and positive youth development. Youth Soc. 2013. [Epub June 2013]. doi: 10.1177/0044118X13491581. Fosco GM, Caruthers AS, Dishion TJ. A six-year predictive test of adolescent family relationship quality and effortful control pathways to emerging adult social and emotional health. J. Fam. Psychol. 2012; 26: 565–75. VanKim NA, Larson N, Laska MN. Emerging adulthood: a critical age for preventing excess weight gain? Adolesc. Med. State Art. Rev. 2012; 23: 571–88. Larson N, Laska MN, Story M, Neumark-Sztainer D. Predictors of fruit and vegetable intake in young adulthood. J. Acad. Nutr. Diet 2012; 112: 1216–22. Stone AL, Becker LG, Huber AM, Catalano RF. Review of risk and protective factors of substance use and problem use in emerging adulthood. Addict. Behav. 2012; 37: 747–75. Luyckx K, Vanhalst J, Seiffge-Krenke I, Weets I. A typology of coping with type 1 diabetes in emerging adulthood: associations with demographic, psychological, and clinical parameters. J. Behav. Med. 2010; 33: 228–38. Maloney AE, Yakutis LJ, Frazier JA. Empirical evidence for psychopharmacologic treatment in early-onset psychosis and schizophrenia. Child Adolesc. Psychiatr. Clin. N. Am. 2012; 21: 885–909. Padilla-Walker LM, Nelson LJ, Carroll JS, Jensen AC. More than a just a game: video game and internet use during emerging adulthood. J. Youth Adolesc. 2010; 39: 103–13. Kloss JD, Nash CO, Horsey SE, Taylor DJ. The delivery of behavioral sleep medicine to college students. J. Adolesc. Health 2011; 48: 553–61. Mathews RRS, Hall WD, Vos T, Patton GC, Degenhardt L. What are the major drivers of prevalent disability burden in young Australians? Med. J. Aust. 2011; 194: 232–5. Casey BJ, Duhoux S, Malter Cohen M. Adolescence: what do transmission, transition, and translation have to do with it? Neuron 2010; 67: 749–60. Towns SJ, Sawyer SM, Stephens L, Clarke SD, Bennett DL. Care for Young People in a Hospital Setting. In: Bennett DL, Towns S, Elliott EJ, Merrick J, eds. Challenges in Adolescent Health – An Australian Perspective. Victoria, British Columbia, Canada: International Academic Press, 2009; 235–242. Anderson G, Sturrock T, Kasengele P. Adolescents and Young Adults in Adult Hospitals. In: Steinbeck K, Kohn M, eds. A Clinical Handbook in Adolescent Medicine. Singapore: World Scientific, 2013; 97–104.
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22 Payne D, Kennedy A, Kretzer V, Turner E, Shannon P, Viner R. Developing and running an adolescent inpatient ward. Arch. Dis. Child Educ. Pract. Ed. 2012; 97: 42–7. 23 Scott EM, Hermens DF, Glozier N, Naismith SL, Guastella AJ, Hickie IB. Targeted primary care-based mental health services for young Australians. Med. J. Aust. 2012; 196: 136–40. 24 Booth ML, Bernard D, Quine S et al. Access to health care among Australian adolescents young people’s perspectives and their sociodemographic distribution. J. Adolesc. Health 2004; 34: 97–103. 25 NSW Department of Health. NSW Youth Health Policy 2011–2016: Healthy bodies, healthy minds, vibrant futures. NSW Department of Health. 2010. Available from: http://www0.health.nsw.gov.au/policies/ pd/2010/pdf/PD2010_073.pdf [accessed January 2014]. 26 Steinbeck KS, Brodie L, Towns SJ. Transition in chronic illness: who is going where? J. Paediatr. Child Health 2008; 44: 478–82. 27 Chambers D, Bagnall A-M, Hempel S, Forbes C. Interventions for the treatment, management and rehabilitation of patients with chronic fatigue syndrome/myalgic encephalomyelitis: an updated systematic review. J. R. Soc. Med. 2006; 99: 506–20. 28 McDonagh JE, Minnaar G, Kelly K, O’Connor D, Shaw KL. Unmet education and training needs in adolescent health of health professionals in a UK children’s hospital. Acta Paediatr. 2006; 95: 715–9. 29 Sturrock T, Masterson L, Steinbeck K. Adolescent appropriate care in an adult hospital: the use of a youth care plan. Aust. J. Adv. Nurs. 2007; 24: 49–53. 30 Beck AL, Adler NE, Irwin CE. A comparison of nurses’ attitudes toward hospitalized adolescents and adults. J. Adolesc. Health Care 1985; 6: 211–5. 31 Steinbeck K, Brodie L, Towns S. Chronic illness and transition to adult care. In: Bennett DL, Towns S, Elliott EJ, Merrick J, eds. Challenges in Adolescent Health an Australian Perspective. Victoria, British Columbia, Canada: International Academic Press, 2009; 225–34. 32 Holmes-Walker DJ, Llewellyn AC, Farrell K. A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15–25 years. Diabet. Med. 2007; 24: 764–9. 33 West C, Brodie L, Dicker J, Steinbeck K. Development of health support services for adults with spina bifida. Disabil. Rehabil. 2011; 33: 2381–8. 34 Craig SL, Towns S, Bibby H. Moving on from paediatric to adult health care: an initial evaluation of a transition program for young people with cystic fibrosis. Int. J. Adolesc. Med. Health 2007; 19: 333–43. 35 Huang J-H, Jacobs DF, Derevensky JL. Sexual risk-taking behaviors, gambling, and heavy drinking among U.S. College athletes. Arch. Sex. Behav. 2010; 39: 706–13.
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36 Schmidt M. Predictors of self-rated health and lifestyle behaviours in Swedish university students. Glob. J. Health Sci. 2012; 4: 1–14. 37 Handzel JM, Brodsky N, Betancourt L, Hurt H. Longitudinal follow-up of poor inner-city youth between ages 8 and 18: intentions versus reality. Pediatrics 2012; 129: 473–9. 38 Kagan SH. Revisiting interdisciplinary teamwork in geriatric acute care. Geriatr. Nurs. 2010; 31: 133–6. 39 Heath H. Guest editorial: the essence of expertise in care for older people – nurses, doctors and teamwork. Int. J. Older People Nurs. 2011; 6: 1–2. 40 Flynn JT, Falkner BE. Obesity hypertension in adolescents: epidemiology, evaluation, and management. J. Clin. Hypertens. (Greenwich) 2011; 13: 323–31. 41 Ritchie AG, Clayton PA, Mackie FE, Kennedy SE. Nationwide survey of adolescents and young adults with end-stage kidney disease. Nephrology (Carlton) 2012; 17: 539–44. 42 Springer SC, Silverstein J, Copeland K et al. Management of type 2 diabetes mellitus in children and adolescents. Pediatrics 2013; 131: e648–64. 43 Curry SJ, Mermelstein RJ, Sporer AK. Therapy for specific problems: youth tobacco cessation. Annu. Rev. Psychol. 2009; 60: 229–55. 44 Hallal PC, Andersen LB, Bull FC et al. Global physical activity levels: surveillance progress, pitfalls, and prospects. Lancet 2012; 380: 247–57. 45 Tai E, Buchanan N, Townsend J, Fairley T, Moore A, Richardson LC. Health status of adolescent and young adult cancer survivors. Cancer 2012; 118: 4884–91. 46 Shaw PH, Boyiadzis M, Tawbi H et al. Improved clinical trial enrollment in adolescent and young adult (AYA) oncology patients after the establishment of an AYA oncology program uniting pediatric and medical oncology divisions. Cancer 2012; 118: 3614–17. 47 Family Medicine Research Centre, The University of Sydney. Public BEACH Data. Select age group 15–24 for April 9–March 10. Available from: http://sydney.edu.au/medicine/fmrc/beach/data-reports/public [accessed May 2013]. 48 Sorich MJ, McKinnon RA. Personalized medicine: potential, barriers and contemporary issues. Curr. Drug Metab. 2012; 13: 1000–6. 49 Franklin VL, Greene A, Waller A, Greene SA, Pagliari C. Patients’ engagement with ‘Sweet Talk’ – a text messaging support system for young people with diabetes. J. Med. Internet Res. 2008; 10: e20. 50 Palermo TM, Wilson AC, Peters M, Lewandowski A, Somhegyi H. Randomized controlled trial of an Internet-delivered family cognitive-behavioral therapy intervention for children and adolescents with chronic pain. Pain 2009; 146: 205–13.
Journal of Paediatrics and Child Health 50 (2014) 427–431 © 2014 The Authors Journal of Paediatrics and Child Health © 2014 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
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doi:10.1111/jpc.12491
REVIEW ARTICLE
Adolescent and young adult medicine is a special and specific area of medical practice Kate Steinbeck,1,2 Susan Towns2,3 and David Bennett2,3 1
The Academic Department of Adolescent Medicine, 3The Department of Adolescent Medicine, The Children’s Hospital at Westmead and 2The Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia
Abstract: Adolescent and young adult medicine is a concept that has gained traction in the last decade or so. The medical literature has come primarily from oncology. Advances in neuroscience that document continuing brain development into the third decade, and research that shows risk behaviours associated with adolescence both remain and may increase in the third decade, have been two of the drivers in the conversation around linking these two age groups together as a medical practice group. A third driver of importance is transition care in chronic illness, where older adolescents and young adults continue to have difficulties making effective linkages with adult care. The case for specific training in adolescent and young adult medicine, including the developmental concepts behind it, the benefits of the delineation and the particular challenges in the Australian health-care system, are discussed. On balance, there is a strong case for managing the health issues of adolescents and young adults together. This scenario does not fit easily with the age demarcations that are in place in acute care facilities. However, this is less the case in community services and can work in focused private practice. Such a situation suggests that both paediatric and adult physicians might be interested in adolescent and young adult medicine training and practice. Key words:
adolescent; AYA medicine; emerging adulthood; health care; young adult.
Adolescent and young adult medicine (AYAM) as a concept has gained significant interest in the last decade or so, with literature support coming primarily from oncology and risk behaviours. This review discusses the age range for adolescent and young adult (AYA), describes the developmental issues related to this age group and considers why the health gains
Key Points 1 Adolescents and young adults share similar developmental and health issues that make sense to place them together when addressing medical care. 2 The health of adolescents and young adults has not improved over the last few decades to the same degree as in younger children and is likely related to patterns of risk behaviour, the prevalence of mental health problems and changing patterns of chronic illness. 3 The challenge for those choosing to work in adolescent and young adult medicine is to develop and evaluate models of care that improve the health of young people both now and into their future. Correspondence: Professor Kate Steinbeck, Medical Foundation Chair in Adolescent Medicine, The Academic Department of Adolescent Medicine, The Children’s Hospital at Westmead, Locked Bag 4001, Westmead, NSW 2145, Australia. Fax: +02 9845 2517; email: kate.steinbeck@health .nsw.gov.au Conflict of interest: The authors declare that they I have no conflicts of interest connected to this paper. Accepted for publication 11 November 2013.
seen in younger children over the last few decades are not replicated in AYA. The current status of AYAM in Australia is reviewed, and suggestions for the development of this specialty are made.
Defining the Age Limits The World Health Organisation defines adolescence as the second decade of life.1 By 10 years of age many children have entered puberty, the major biological event of adolescence. With the age of menarche in Westernised countries falling over the last 100 years,2 some females will have experienced this late pubertal event by the start of their second decade. A recent study demonstrated that the onset of puberty in males is now 1.5 years earlier than boys in the 1970s, with a mean age of 10.14 years.3 The definition of young adult is more contentious.4 Erik Erikson allowed up to 40 years, the end to the ‘prime of life’ and entry into middle age. The sociology literature favours 30 years, as young adults remain dependent for longer on the family of origin and are less likely to have attained the traditional markers of adulthood. Gen Yers (born from early 1980s to mid-1990s) are now young adults and the most globally connected generation, with aspirations and activities differing markedly from those of their parents. In the medical literature, AYA oncology variably includes to the age of 30–40 years.5 We define AYA as 10–24 years – the first year of the third WHO age grouping to the last year of the fifth. Advancing knowledge of neuroscience supports the upper age limit and also fits with the theory of emerging adulthood proposed by J. J. Arnett in 2000 and defined as 18–25 years.6
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Brain Development A prolonged period of neurological development commences in early adolescence.7,8 There is an initial increase in grey matter with an accompanying increase in synaptic connection. In later adolescence, there is pruning of the synapses so that more effective pathways develop. Increased myelination of the long tracts of the brain between the cortex (particularly the prefrontal cortex) and lower sections of the brain provides more rapid neuro-communication. These universal maturational processes should support behaviour change, with a reduction in impulsivity and the ability to better judge risk and consequences. These cognitive maturation processes are relevant to AYA health, as these relate to health literacy, high-risk decisionmaking (including decisions with long-term health outcomes) and self-management in chronic illness, health service policy and health service planning. The approach with AYA is clearly not to alter biology but to provide interventions that are directed at support or ‘scaffolding’ within the societal mesosystem (family, peers and community).9 The continuing role of family support for emotional and social well-being is important10 but often challenged by issues around autonomy. These mesosytemic influences (relations between microsystems or connections between contexts) are yet to be addressed in hospital systems for AYA. However, empirical health data provide a picture that is somewhat at odds with a smooth, unidirectional progression to maturity. The achievement of the tasks of adolescence is necessary for competent adulthood, but these have become more complex in the 21st century and may contribute to the health issues of emerging adulthood.
Emerging Adulthood and Health Emerging adulthood is associated with deteriorating health and well-being in most prevalent physical and mental health conditions of adolescence. The AYA physician needs to skilfully manage the interface between physical and mental health and health-related behaviours. There are many examples. Young adulthood is a time of increasing weight gain.11 Most overweight and obese adolescents become overweight and obese young adults. Worsening dietary choices and preferences, which commence in adolescence, are reinforced in young adulthood.12 These may set up a cycle for another generation, as young adults become parents and model these health behaviours for their own children. Substance use and misuse, which commence often as adolescent exploratory behaviour, peak in young adulthood.13 There is reinforcement of patterns of coping with chronic illness in young adulthood,14 some of which are suboptimal. The first episode of psychosis often occurs in the third decade15 but may have been preceded by mood and affect disturbance in adolescence. Greater and potentially unhealthy use of the Internet and video gaming use,16 together with worsening of sleep disorders including insomnia and delayed sleep phase may impair health.17 An AYA physician is trained to identify and treat these complex and interrelated health problems better than the organ specific management in adult medicine. Emerging adulthood is clearly a time where health trajectories are consolidated and supports the argument for bringing AYAM together. Adolescents and young adults are not enjoying the 428
health gains that education, vaccination and other advances in medical care have brought to younger children. Morbidity and mortality in adolescents and young adults have failed to reduce at a similar pace,18,19 with unintentional injury being the leading cause of mortality in AYA, injury which is often associated with established risk behaviours and mental health problems.
AYAM as a Specialty In Australia, three hospitals offer adolescent-specific care in a paediatric setting20 and two hospitals offer AYA care in an adult setting.21 In Sydney, these are The Department of Adolescent Medicine at The Children’s Hospital at Westmead, Adolescent Medicine at Westmead Hospital and Adolescent and Transitional Medicine at The Royal Prince Alfred Hospital. In Melbourne, there is the Centre For Adolescent Health at the Royal Children’s Hospital, and Paediatric and Adolescent Medicine at St Margaret’s Hospital in Perth.22 AYAM care is also provided at headspace services (12–25 years). This is a national mental health initiative,23 often co-located with primary health-care services. Community Youth Health Services (12–24 years) also provide age-specific health care for underserved populations, including those who are homeless or at risk of homelessness.24 There are designated adolescent medical specialty clinics for chronic illness in paediatric hospitals and young adult specialty clinics for chronic illness in some adult hospitals. These services have arisen on an ad hoc basis, driven by individuals, rather than by any overarching health policies. NSW Health is the first state to develop a specific Youth Health Policy.25 The Policy’s three major goals are that young people are encouraged and supported to achieve optimal health and well-being, that young people experience the health system as positive, respectful, supportive and empowering and that responses to the health needs of young people are evidence-based, promote prevention and early intervention and are delivered efficiently and effectively. The third goal resonates particularly strongly in the context of the AYAM discussion. At the time of writing, AYAM is not, in Australia, a recognised specialty with a formal training programme. The Royal Australasian College of Physicians, with the assistance if its Joint Adolescent Health Committee, is currently preparing an application for recognition. Some paediatricians who work as adolescent physicians and adult physicians who focus on the young adult age group have also chosen to work within an organ-specific system, whereas others have maintained a more generalist approach. Dual training could be attractive, particularly in medical specialties where there are significant numbers of AYA (diabetes, neurology and gastroenterology).26 The AYAM specialist requires expertise in a developmental model of care, where the interplay of the bio-psychosocial is both acknowledged and dealt with. This flows naturally from the paediatric model where behavioural management work is common, and family and environmental interventions are included. The AYAM specialist may address anxiety, depression, chronic fatigue and other functional and somatising disorders that present significant management challenges,27 interactions with peers and education systems, substance use and other risk behaviours, therapy nonadherence, and concerns related to sexuality and reproductive health. They may also be called upon to interact with and support
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parents. The AYAM specialist may work collaboratively with sub-specialty organ-specific colleagues to obtain a better outcome for the young person’s overall well-being.28 While the medical conditions of young adulthood have much in common with those of adolescence, young adults are managed in a health-care system that is focused on the individual and which expects each patient to be autonomous and to understand the rules of engagement. While adolescents make up 20–25% of patients in paediatric acute care services, young persons aged 12–24 years make up only 6–8% of patients in acute care adult services.29 AYA are thus diluted in larger adult services and are often not strong advocates for their own health care. It has been stated that AYA fall victim to stereotyping around failure to keep appointments and self-management in both paediatric and adult services, although it is hard to find empirical evidence to support this assertion.30
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Non-Communicable Diseases The early appearance of non-communicable diseases, many of which were previously the domain of middle age onwards, also introduces AYA to adult medicine. Hypertension is increasing in prevalence in the AYA age group.40 Where hypertension in AYA was previously due to renal disease, obesity is now a significant cause. Whatever the aetiology of hypertension, the final outcomes of inadequate identification and treatment are cardiovascular disease and end-stage kidney disease (ESKD).41 Both type 1 and type 2 diabetes are increasing in prevalence in AYA. The complications of diabetes, particularly ESKD, appear more rapidly in youth with type 2 diabetes, significantly adding to personal and community costs.42 Females with obesity and prediabetes are at risk for gestational diabetes, which in turn increases the chances of obesity, diabetes and the metabolic syndrome in their offspring.
Transition in Chronic Illness One of the clearest connections in health between paediatric and adult health care, and hence AYAM, is the transition process in chronic illness. Empirical data as to what works best in transition and what are the health cost savings of successful transition in both the short and longer term are lacking.31 In Australia, transition to adult care usually takes place at the end of secondary schooling and which for the majority is in their 19th year, coinciding with other major and perhaps more attractive life transitions. The priorities of AYA are almost certainly different to the priorities that their health providers consider they should have, and which these providers struggle to understand or manage. Examples of young adult services for chronic illness that take into account these transitional priorities include diabetes,32 spina bifida33 and cystic fibrosis.34
Life-Style Transitions There are limited data about the more general life-style transitions and their impact, except perhaps in the college/university literature, which describes one group of AYA.35,36 While for many AYA, the life-style balance sheet remains positive; this may not be the case for vulnerable groups including the homeless, the incarcerated, refugees and immigrants, rural and remote youth, AYA mothers and those with limited social competencies. The life trajectories for all these groups may be severely impaired with much of day to day living spent in survival mode.37 AYAM would have a great deal to offer these under-served populations, who do not easily access traditional models of care.
Models of Care Geriatric medicine has a commonality with AYAM and provides unexpected support for the concept of AYAM as a developmental speciality that functions well in adult health facilities.38,39 In geriatrics, age-specific health issues predominate, and patients are not always good reporters of symptoms and signs. Self-care and decision-making are often compromised, and families are important in decision-making around care. Multidisciplinary team care is an accepted model in geriatrics, as in AYA, and it is this multidisciplinary teamwork that is often not present in adult health-care facilities.
Life-Style and Future Risk The three major precursors of adult morbidity and mortality are tobacco use, overweight and physical inactivity that commonly have their origins in adolescence and young adulthood where life-style habits become entrenched. If a young person starts using tobacco in adolescence, they are likely to become lifelong users.43 It is in adolescence where there is a significant fall in physical activity.44 AYA is a time when intervention in life-style precursors of adult morbidity and mortality need to be addressed in an age-relevant manner. Most empirical evidence for life-style interventions comes from older populations with established morbidity, morbidity which is a significant driver to changing life-styles and morbidity which AYA are yet to overtly develop. The highest levels of binge drinking occur in young adults13 and yet there is little evidence as to how to address this problem. It is young adults who have the legal freedom, autonomy and higher disposable incomes to consume risk levels of alcohol and other substances more frequently and in a culture where it is normative behaviour.
Lessons from Oncology Oncologists played a major role in drawing attention to AYA.45 Theirs was the first medical specialty to provide compelling empirical evidence to treat this age group as both important medically and deserving of specific treatment approaches. Fewer young persons in the AYA group were involved in clinical trials, their overall outcomes were worse than for either younger or older cancer sufferers and their outcomes varied in relation to whether they were treated in paediatric or adult cancer units. The reasons behind these findings are complex and not all are unique to oncology. Oncology turned this situation into an opportunity to create specialist centres for AYA care, which addressed not only the specific cancer treatments but also the developmental needs of this age group. Oncology has started to produce the empirical evidence that AYA cancer outcomes are improving.46 What is now needed is evidence from other treatment groups that AYA outcomes can be improved with AYAM.
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The Necessity of Evidence The failure to make inroads into AYA health, which is occurring in the face of major medical advances, implies the potency of this developmental stage to derail the aspirations and competencies of medical teams. What is lacking is the evidence about what interventions and approaches work best and what constitutes the benchmark for improved AYA care in many situations. The AYAM specialist is someone who can practice confidently and provide expertise in two very different medical cultures, but also someone who can design and carry out quality research studies that support the practice of AYAM. A third attribute is that of educator. It is necessary to address the implied resistance when AYA physicians are viewed as worrying about something out of which young people grow. To the contrary, there are data to back the observation that poorly managed morbidity in adolescence almost invariably carries over into adulthood. AYAM is also necessary because primary care providers cannot be expected to deal with all AYA health problems. The AYA presentations for 15–24 year olds from the Family Medicine Research Centre at the University of Sydney BEACH data show that general practice presentations do not necessarily reflect the major health issues for adolescents. Respiratory illness tops the list, followed by skin, and with psychological disorders constituting less than 10%. Presentations do not always reflect the major concern and long consultations, such as may be necessary for AYA, are often not supported.47
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Conclusion Differing management approaches will be the key to AYAM. AYAM is likely to be at the forefront of personalised medicine, as this age group takes advantage of genomics, metabolomics and nanotechnologies.48 AYA are also likely to embrace newer methods of electronic communication and record keeping. Having responded positively to SMS technology49 and the Internet as therapeutic tools,50 they are likely to embrace electronic personal medical records, given their facility with electronic media. There is work to be done in developing proactive and preventive models of care. One-stop health care imbued with youth friendliness and some service flexibility is also important. Even if young people wish to be active health-care consumers, they may not have personal control over their time away from education and employment and, because of this, they may miss out on necessary health care. Given the increasing longevity of the population, any improvement in AYA health through agespecific health care will be beneficial to the whole community. Recognising the unique health-care needs of the AYA population and providing clinical training and expertise would facilitate prevention, early intervention and long-term management strategies.
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