Providing ‘adolescent friendly’ health care to young people with chronic conditions



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


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.

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 Director, Centre for Adolescent Health Royal Children’s Hospital Melbourne Professor, University of Melbourne

REFERENCES

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.

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