Assessing the Satisfaction of Teens with Kidney Transplants Who Have Attended an Adolescent Transition Clinic

IntroductionChildren who undergo kidney transplantation at less than 18 years of age experience excellent one-year allograft survival rates of 93-94%, however these statistics alarmingly change at 5 years status post transplant. The 5-year allograft survival rate for patients who receive a transplanted kidney between the ages of 11 and 17 years drops to a disappointing 63% (1). The only other age group to experience such a low allograft survival rate (59%) is comprised of patients over 65 years of age. In the North American Pediatric Renal Trials and Collaborative Studies (NAPRTCS) registry, adolescents had the poorest graft survival among all pediatric age groups, and once diagnosed with rejection, they did not respond as well to treatment, exhibiting fewer complete rejection reversals and greater residual allograft dysfunction (2).These negative health outcomes in adolescents are likely multifactorial, but seem to be exacerbated during the time of transition from pediatric to adult healthcare providers (3-4). The transition of adolescents to adult medical services adds to the risk of allograft loss because of discontinuity in care combined with the complex and challenging psychosocial issues faced by adolescents with chronic illness. In a study of 20 young adults with kidney transplants in the United Kingdom who had been transferred from pediatric to adult transplant centers, 8 transplants failed within 36 months of transfer (40%) (4). In 2007, the United States Government Accountability Office published a report that examined the frequency of transplant failures and subsequent cost to Medicare from 1997 through 2004 (5). Three age groups were defined: pediatric recipients were those younger than 18 years old, transitional recipients were those younger than 18 at the time of transplant and at least 18 at the end of the study interval, and adult recipients were those at least 18 at the time of transplant. Transitional recipients experienced the highest rate of transplant failures compared with pediatric or adult recipients illustrating the challenges present during the adolescent years.Medication nonadherence is a major risk factor for allograft rejection and loss in both adults and pediatrics and results in poor long-term kidney transplant outcomes and subsequent devastating medical and economic consequences on individual and societal levels. Ettenger et al (6) found that nonadherence led to rejection with subsequent kidney allograft loss or dysfunction in 71% of patients who had received deceased donor kidney transplants (N=70). The UNOS registry has reported that 13% of allograft loss in adolescent kidney transplant recipients is due to nonadherence.7 In a recent study of the USRDS database, Chisholm et al (8) found that pediatric kidney transplant recipients who experienced allograft failure were twice as likely to be nonadherent (OR 2.07, 95% CI 1.12-4.06) and greater adherence to immunosuppressive medication was significantly associated with longer time to graft failure (P=0.009).Although transition programming for adolescents with chronic illness is purported to be necessary, there is little evidence to support their utility. Two years after designing and implementing an Adolescent Kidney Transplant Transition Clinic (AKTTC), we performed survey of patients who attended our transition clinic and transitioned to or are pending transition to an adult healthcare setting within the year to assess patient satisfaction with such a comprehensive program. In the current investigation, we review participants' surveys to explore patient satisfaction with the AKTTC.MethodsAdolescent Kidney Transplant Transition ClinicIn June 2007, we initiated a novel Adolescent Kidney Transplant Transition Clinic (AKTTC) as a healthcare self-management program at Emory-Children's Healthcare of Atlanta. Healthcare self-management and the provision of transitional care are inextricably linked with medication adherence and are necessary components of caring for adolescents with chronic illness. …