Assessment of transition readiness skills and adherence in pediatric liver transplant recipients

Abstract

Objective-To examine transition readiness, adherence and health outcomes in pediatric liver transplant recipients using a clinically administered screening measure.Methods-71 pediatric liver transplant recipients (11-20 years) and 58 parents completed a clinic-based transition readiness survey measuring perceived and demonstrated self-management skills, allocation of responsibility for health-related tasks, regimen knowledge, and psychosocial adjustment. Adherence was measured using standard deviations (SDs) of immunosuppressants, proportion of immunosuppressant blood levels out of target range, and clinic attendance. Health outcomes included liver test panels, biopsies, rejection episodes, and hospitalizations.Results-All domains of transition readiness, with the exception of demonstrated skills, and nonadherence were positively correlated with age. Proportion of immunosuppressant blood levels below target range was positively correlated with self-management skills and increased responsibility for medication tasks. Parent regimen knowledge was associated with clinic attendance. Health outcomes were significantly related to medication nonadherence, but not to transition readiness domains.Conclusions-Medication adherence is considered to be a key factor in the transition from pediatric to adult-centered transplant care. Nonadherence is associated with an increased risk for medical complications and is potentially modifiable. Interventions to promote self-management skills and adherence should be an essential component of transition planning.

Emerging Adulthood as a Critical Stage in the Life Course

“…Adverse health-related outcomes documented in the young adult population with diabetes include a decline in disease self-care behaviors and an increased risk for diabetes-related complications (Bryden et al 2001;Fredericks et al 2010;Yeung et al 2008). In addition, emerging adults with diabetes are at higher than average risk for psychosocial morbidity including social delays and isolation, impaired social competence, and emotional problems such as depression (Helgeson et al 2007).…”

The management of childhood liver diseases in adulthood

“…The first stage of transition in the shared management model begins approximately at 10 years of age and involves the introduction of the concept of transition [7,8]. Over the following years, a slow process ensues of engaging and preparing these young children in becoming independent young adults [7,9]. The patient essentially swaps roles with the parent or carer and takes on a more active role in self-care activities ( Fig.…”

“…The patient essentially swaps roles with the parent or carer and takes on a more active role in self-care activities ( Fig. 1) [9], whilst remaining the primary focus of attention. These self-care activities include taking medications, leading a healthy lifestyle and attending clinics on their own.…”

“…Although most transition services will typically specify an age range, i.e., 14-18 years, in which patients move to an adult clinic, services need a degree of flexibility, and physicians and health care services may need to adapt to the needs of the individual [10]. Older adolescents and young adults for instance demonstrate higher rates of non-adherence compared to younger children [9,11]. Age alone should not be the single factor which determines readiness of transfer to adult services.…”

“…Studies performed in adolescent transplant recipients provide information which is transferable to adolescents with chronic liver disease. Current data suggests that up to onethird of adolescents are non-adherent with medication and their clinic visits, leading to worsening liver function and possible organ failure [7,9,19,20]. The prevalence of non-adherence in adolescent transplant recipients can be as high as 50% [20].…”