Providing ‘adolescent friendly’ health care to young people with chronic conditions
Adolescence has changed. Downward shifts in the age of onset of puberty and upward shifts in the age of achieving the social role transitions that historically marked adulthood means adolescence now continues for longer. Rather than 10 to 19 years, adolescence is increasingly viewed as extending up to 24 years. This extended length is consistent with new understanding of cognitive maturation which continues to at least the mid-twenties, and greater appreciation that both pubertal maturation and brain development drive many health-related behaviours in adolescence and young adulthood (Sawyer et al., 2012).
Adolescence had typically been viewed as the healthiest time in life. However, views about the significance of adolescent health have also changed. Adolescence is now appreciated as a critical developmental phase in which the onset of health-related behaviours (behaviours that positively and negatively affect health such as smoking, physical activity) and the presence of various health states (such as chronic diseases, mental disorders, obesity), dramatically affect adolescent’s health and are powerful determinants of future health (Sawyer et al., 2012). One thing that has not changed is that adolescence is a profound period of physical, emotional, cognitive and psychosocial maturation that is played out within the influence of family, peers and school, and shaped by local culture and global media.
When a chronic condition adds complexity to a life-transitioning period
The presence of a chronic physical condition, that affects around 15% of adolescents, is an individual risk factor that has the potential to complicate every aspect of adolescent development. While most adolescents with special health care needs are resilient and make a successful transition to adulthood, they have double the rate of emotional disorders (Sawyer et al., 2007a). Furthermore, contrary to what has long been assumed, adolescents with chronic health conditions appear more likely to engage in health-risk behaviours such as smoking, alcohol and unsafe sexual practices (Suris et al., 2008). Many such behaviours result in a “double whammy” where the higher prevalence is compounded by a higher attributable risk (Sawyer et al., 2007b). For example, smoking in diabetes escalates microvascular and macrovascular diseases, and alcohol lowers the seizure threshold in epilepsy.
Decade by decade, ongoing technical improvements have resulted in more children with previously fatal childhood conditions (e.g. cystic fibrosis, chronic heart disease and spina bifida) surviving well beyond adolescence. Other patterns of disease have also changed, with far less acute infectious disease in adolescence, but an increasing incidence of other conditions such as anaphylaxis and food allergy, autoimmune disorders including type 1 diabetes, inflammatory bowel disease, obesity, type 2 diabetes, and various behavioural and mental disorders.
The health issues of adolescents with chronic conditions are “linked to the illness they suffer from, to adolescence in general, and to psychosocial problems generated by the interaction between the illness, the adolescent and his immediate environment” (Miauton et al., 2003). Given the widespread lack of undergraduate and postgraduate training in adolescent health for both paediatric and adult healthcare professionals, the complexity of adolescent development and the effect of this on health, it is not surprising that many health professionals report that managing adolescents is more difficult than other age groups (Sawyer et al., 2007a).
How well do specialist health services support young people with chronic health conditions?
Arguably, neither children’s nor adult services have yet responded to the changing burden of disease in adolescents (Sawyer, 2008). ‘Adolescent friendly’ models of care have been developed for adolescents with some chronic health conditions, such as specialist health services for adolescents with diabetes and cancer that straddle the 15-24 year old age group. An important driver for diabetes services has been the high drop-out rate once adolescents transfer to adult services. In contrast, consumer demand has been a leading driver of new models of care for adolescents with cancer. Other models relate to the provision of peer support for young people with chronic health conditions. Face-to-face peer support groups (e.g. http://www.rch.org.au/chips) and web-based support can be highly valuable adjuncts to clinical practices. Despite the benefits, these typically remain unfunded by mainstream services. The same lack of funding is too often seen for other approaches that seek to improve the quality of health care by greater engagement of adolescents as consumers, such as Youth Advisory Committees.
The age that child-focused specialist health services end has gradually crept upwards with time. Instead of ending at 14-15 years (as it was about 50 years ago), many children’s hospitals now commonly end at 18-19 years, following which they transfer to adult services if specialist health care is still required. The changing shape of adolescence means that the care of many adolescents with chronic health conditions is transferred to specialist adult services at the same time they experience other major transitions (e.g. education), when they are not yet cognitively mature, often still living at home, and not yet responsible for self-managing their condition. The high “drop-out” of care as young people fail to successfully engage in adult services, the lack of satisfaction with health care that many young people and families report at this time, and the lack of developmentally appropriate care for adolescents suggest it is time to seriously re-think how best to provide more ‘adolescent friendly’ health care within both paediatric and adult services (Sawyer, 2008).
Without doubt, much more could be done within mainstream services to provide this. Just ask any young person.
|Author :||Susan Sawyer, MBBS MD FRACP
Centre for Adolescent Health
Royal Children’s Hospital Melbourne
University of Melbourne
Miauton, L., Narring, F., Michaud, P.A. (2003). Chronic illness, lifestyle and emotional health in adolescence: results of a cross-sectional survey on the health of 15-20-year-olds in Switzerland. European Journal of Pediatrics, 162: 682-689.
Sawyer, S.M., Afifi, R.A., Bearinger, L.H., Blakemore, S.J., Dick, B., Ezay, A., Patton, G.C. (2012). Adolescence: A Foundation for Future Health. Lancet (in press)
Sawyer, S.M. (2008). In search of quality care for young people with chronic conditions. Journal of Paediatrics and Child Health, 44 (9): 475-477.
Sawyer, SM, Drew, S., Yeo, M., Britto, M. (2007a) Adolescents with a chronic condition: challenges living, challenges treating. Lancet, 369 (9571): 1481-9.
Sawyer, S.M., Drew, S., Duncan, R. (2007b). Adolescents with chronic disease: the double whammy. Australian Family Physician, 36: 2-6.
Suris, J.C., Michaud, P.A., Akre, C., Sawyer, S.M. (2008). Health risk behaviours in adolescents with chronic conditions. Pediatrics, 122: 1113-1118.