COMPLETED RESEARCH

From paediatric to adult health care: Evaluating the outcomes of a transition program from the point of view of adolescents with chronic health conditions

Honours Research Student: Miriam Rizk
Supervisor: Dr Nikki Wedgwood

Background

In Australia, as in numerous other countries, significant numbers of young adults with chronic conditions continue to receive their health care in paediatric units/hospitals. In most cases, paediatric settings are inappropriate for young adults at many levels. Most paediatric centers are not equipped to cater for adults. While children receive optimal primary care in a medical practice experienced in the care of children, adults benefit from receiving care from physicians who are trained and experienced in adult medicine. Developmentally, treating young adults as children delays the maturation process, the sense of independence and control in the care decision-making process and the general satisfaction in being treated as an adult. This is particularly important for adolescents with chronic health conditions who often have high levels of dependency on families and paediatric health care providers. On the other hand, the transition of young people with chronic health conditions from paediatric to adult health care services is often stressful, difficult and traumatic thus can also have a negative effect on the emotional and physical wellbeing of young adults with chronic health conditions. Poor transition results in measurable adverse consequences in terms of morbidity, mortality and long-term prognosis, as well as educational and social outcomes. Thus the health and wellbeing of young people with chronic health conditions can be compromised and their potential remain unrealised if transition is unsuccessful or inadequate.

Aims

Although the number of studies of transition services is slowly increasing, very little evidence is available about the effectiveness of specific models of transition. There is general agreement throughout the transition literature on the need for further evaluation of specific transition programs, particularly from the perspective of young people with chronic conditions, their parents and clinicians. In Australia, one such program is the Greater Metropolitan Clinical Taskforce (GMCT) Transition Care Network, which was established in May 2004, with the aim of improving the transition processes for young people throughout NSW.

The aims of this project are to:

  1. evaluate the effectiveness of the Greater Metropolitan Clinical Taskforce (GMCT) Transition Care Network from the perspective of young adults with thalassaemia transitioning via the GMCT and;
  2. to compare these results with the experiences and perspectives of one cohort (now in their 20s and 30s) who transitioned from paediatric to adult health care pre-GMCT and another cohort (now in their 40s and 50s) who remained in paediatric care well into adulthood before being transferred to adult care.

Findings

According to the literature, a successful transition is one where the patient is able to: meet their own health care needs and navigate the adult health care system independently of their parents; adhere to their therapeutic regimen–including medication compliance and attending medical appointments; and keep their health condition stable without relying on crisis services (Wedgwood, Llewellyn, Honey & Schneider 2008). Unlike those in previous cohorts, all of the participants who transitioned via the GMCT transition program, met the majority of these criteria. Certainly, some of this success can be attributed to the GMCT transition program. Yet, by using a life history approach and comparing the transition experiences of all three cohorts it becomes evident that other factors have heavily influenced the smoother transition of the more recent (GMCT) cohort. The fact that the cohort which were the first in Australia to transition out of paediatric care (albeit in their 20s and 30s) transferred into an adult health care system where the doctors and staff had no knowledge or experience of adults with thalassaemia, greatly diminished the quality of their transition. Medical advances in the treatment of the condition were also paramount. Unlike this first cohort to transition, subsequent cohorts were not told as children they would die before reaching adulthood, nor were they treated in a paediatric hospital until they were nearly thirty years old. The introduction of Deferasirox-which revolutionised the health and healthcare treatment of people with haemoglobinopathies markedly increasing their compliance and adherence to the iron chelation therapy vital for their survival–enabling the GMCT cohort to make a smoother transition as treatment became less risky and complex than it was for earlier cohorts, who transitioned before its introduction. In the literature a successful transition is said to be achieved through an individually tailored approach to planning, which is developmentally appropriate, well-timed and coordinated by a transition service coordinator. Yet, for the GMCT cohort, who met the majority of the outcomes of a successful transition, some aspects of their transition did not fit this ideal model. For instance, the literature emphatically states that patients need to be involved in their transition and that parental input should be minimal (Schidlow, 1990; Shaw et al., 2004; Viner, 1999), yet for some of those in the GMCT cohort, their parents acted to varying degrees as barriers to their involvement in transition planning and it was the parents’ ‘preferences, goals and aspirations’ (Beresford, 2004) which took centre stage. Whilst the transitions of GMCT cohort were timed to coincide with another social transition (graduation from high school) as recommended by some (Hauser & Dorn, 1999; Viner, 1999) this meant transitioning arbitrarily at 18 years of age for most or 16 for those who left school early. According to the literature, this practice is not recommended because it cannot ensure an individual patient is ready to manage and continue their care independently of their parents or that they have completed the developmental tasks of adolescence-criteria which researchers and paediatric and adult health care providers deem vital to a successful transition (Christie & Viner, 2005; Kaufman, 2006; Michaud et al., 2004; Viner, 1999). The literature suggests that a transition which is not thoughtfully planned for and is incorrectly timed can “compromise medical care” (Cappelli et al., 1989). This was true for one of the GMCT patients, whose mother’s lack of involvement in her transition at 18 did negatively impact on some of the transition outcomes. For the other two GMCT participants, the findings were similar to those of Nasr et al. (1992) who found that “patients followed through with adult care” despite being transferred on the basis of chronological age. As stressed in the literature, transition impacts on crucial aspects of life other than health, such as employment, education, independent living and community inclusion (Geenen, Powers, & Sells, 2003; Kirk, 2008). Thus, the primary concerns and priorities of patients during their transition is not always the same as those of their health professionals. For the participants in the GMCT cohort, their main concern whilst transitioning was to not have their hospital appointments clash with their work and study commitments. In instances where clashes occurred, their obligation to work was prioritised more than their obligation to the hospital. This raises the question of whether adult hospitals should run adult-friendly clinics once a month to accommodate patients in full-time employment.

Implications

Since the transition literature began more than 30 years ago, there have been many changes which have positively affected the transitions of young people with chronic health conditions. Not least of all is the greater depth of professional experience and medical knowledge about adults with chronic health conditions like thalassaemia which had, until two or three decades ago meant few with those conditions survived into adulthood. Thus, as this study shows, it is time now for the research and literature on transition to move beyond repeatedly bemoaning the inadequacies of certain aspects of transition and to instead focus energies more fruitfully on the evaluation of existing transition programs. Indeed, whilst, the small sample limits the extent to which the findings can be generalised, what this study does do is point toward the complexity of factors impacting on the successful transition of young people with chronic health conditions. These include not only the transition program itself, but factors beyond it, such as the life histories of patients and, perhaps most importantly, broad socio-historical factors. It thus points toward an urgent need for further evaluations of other programs. Given that chronic health conditions are set to become the main cause of death by 2020 in both developed and developing countries, more in-depth, up-to-date and context-specific knowledge is urgently required on the effectiveness of transition services for: different chronic health conditions (particularly those which remain more chronic and complex than thalassaemia); in different countries and health service contexts; and with different transition programs.

Related publications

Beresford, B. (2004). On the road to nowhere? Young disabled people and transition. Child: Care, Health & Development, 30(6), 581-587.

Cappelli, M., McDonald, N. E., & McGrath, P. J. (1989). Assessment of readiness to transfer to adult care for adolescents with cystic fibrosis. Children's Health Care, 18(4), 218-224.

Christie, D., & Viner, R. (2005). ABC of adolescence - Adolescent Development. British Medical Journal, 330(7486), 301-304.

Geenen, S. J., Powers, L. E., & Sells, W. (2003). Understanding the role of health care providers during the transition of adolescents with disabilities and special health care needs. Journal of Adolescent Health, 32(3), 225-233.

Hauser, E. S., & Dorn, L. (1999). Transitioning adolescents with sickle cell disease to adult-centered care. Pediatric Nursing, 25(5), 479-488.

Kaufman, M. (2006). Role of adolescent development in the transition process. Progress in Transplantation, 16(4), 286-290.

Kirk, S. (2008). Transition in the lives of young people with complex healthcare needs. Child: Care, Health & Development, 34(5), 567-575.

Michaud, P. A., Suris, J. C., & Viner, R. (2007). The adolescent with a chronic condition: Epidemiology, developmental issues and health care provision. Switzerland: World Health Organisation.

Nasr, S. Z., Campbell, C., & Howatt, W. (1992). Transition programs from pediatric to adult care from cystic fibrosis patients. Journal of Adolescent Health, 13(8), 682-685.

Schidlow, D. V. (1990). Life beyond pediatrics. Transition of chronically ill adolescents from pediatric to adult health care. The Medical Clinics of North America, 74(5), 1113-1120.

Shaw, K. L., Southwood, T. R., & McDonagh, J. E. (2004). User perspectives of transitional care for adolescents with juvenile idiopathic arthritis Rheumatology, 43(6), 770-778.

Viner, R. (1999). Transition from paediatric to adult care. Bridging the gaps or passing the buck? Archives of Disease in Childhood, 81(3), 271-275.

Wedgwood, N., Llewellyn, G., Honey, A., & Schneider, J. (2008). The transition of adolescents with chronic health conditions from paediatric to adult services.

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