The transition of kidney transplant recipients: a work in progress

Abstract

This study examined the process of transition for pediatric kidney transplant recipients who were transferred from the Royal Children's Hospital to adult health services between October 2005 and September 2006. A retrospective review of case notes was used to identify graft stability 12 months before and after transfer. A patient satisfaction questionnaire was sent to all transferred patients in October 2007. Eleven patients were identified with a mean age of 19.5 years. Nine of these 11 patients remained medically stable over the 2-year study period, as evident by stable serum creatinine estimations pre- and post-transfer and no episodes of rejection or hospital admissions. One patient had advanced chronic allograft nephropathy at the time of transfer and, as anticipated, required dialysis 12 months thereafter. Another patient experienced antibody-mediated rejection soon after transfer and required intensive therapy. Ten subjects (91%) completed the satisfaction questionnaire. The responses suggested inadequate involvement of young people in the transition planning and the perception of a lack of preparation prior to transfer to adult services. Overall, the results indicate that transition planning needs to start earlier and should involve young people more actively and that the focus should be broadened beyond achieving transfer, as may currently be the case, to more fully reflect what is embodied by the term transition.

Transition from pediatric to adult health care: expectations of adolescents with chronic disorders and their parents

“…A number of studies have focused on the views of chronically ill adolescents and their parents, but a disease-specific approach was mostly applied [4,5,15,16,24,26]. It was concluded that this disease-specific focus does not allow generalization of the results for transition recommendations [8].…”

Transition Care for Children With Special Health Care Needs

“…Among the 25 studies, 8 studied transition care for adolescents with diabetes, 27-32,39,40 5 studied adolescents who had undergone organ transplant 22,23,26,33,34 (all but 1 of these focused on kidney transplant), and 2 studied adolescents with sickle cell disease. 36,41 The remainder studied a variety of conditions including congenital adrenal hyperplasia, 21 HIV, 24 epilepsy, 25 juvenile idiopathic arthritis, 38 spina bifida, 42 cystic fibrosis, 37 or inflammatory bowel disease 43 or included a patient population comprising .1 chronic disease.…”

“…36,41 The remainder studied a variety of conditions including congenital adrenal hyperplasia, 21 HIV, 24 epilepsy, 25 juvenile idiopathic arthritis, 38 spina bifida, 42 cystic fibrosis, 37 or inflammatory bowel disease 43 or included a patient population comprising .1 chronic disease. 20,35,44 Twelve studies were conducted in Europe: 8 in the United Kingdom, 21,22,29,32,35,36,39,50 1 in Germany, 33 1 in Spain, 40 and 2 in 26 One study included data from the United Kingdom and Australia. 24 Few studies used a concurrent comparison group.…”

“…A small body of literature 22,23,26,33,34 is available on the transition of pediatric patients with organ transplants to adult care ( Table 3). Four of the 5 studies 22,23,26,33 focus on kidney transplant patients, with the remaining study 34 on liver transplant.…”

“…Four of the 5 studies 22,23,26,33 focus on kidney transplant patients, with the remaining study 34 on liver transplant. All of the studies on kidney transplant patients include the evaluation of a specific transition-oriented clinic-either one for youth alone or a joint pediatric-adult clinic.…”