Survival following pediatric heart transplantation (HTx) continues to improve. The transition from pediatric to adult care is becoming a pivotal stage in the ongoing medical management of this population. Published data support enhanced outcomes for adolescent patients with increased attention to transitional care. The purpose of this study was to explore the 'transition experience' of adolescent HTx recipients and families.All teens (12-18 years) and parents at a singlecenter HTx program were invited to participate in semistructured interviews. Qualitative, phenomenological methodology was used to build theoretical knowledge and guided the data collection and analysis. The study population included 14 patients (7 males) with a mean age of 15.7 ± 1.8 years (11.7-17.8 years) and at a mean of 4.1 ± 3.3 years post-HTx (0.3-9.2 years) at the time of study participation. Major themes identified included: (i) adolescent disinterest and apathy regarding transition to adult care versus parental anxiety about their child's eventual departure from the pediatric transplant center, (ii) perceived differences in pediatric versus adult care and (iii) identification of strategies described as helpful in facilitating the transition. Understanding the experiences and perceptions of adolescent HTx recipients and their parents is crucial to planning effective transitional care and necessary for evidenced-based practice.
Preparing pediatric transplant recipients and their families for transition to adult-centered care is an emerging challenge for transplant teams. These guidelines provide practitioners with a developmentally sensitive overview of important transition-related domains and strategies directed toward patients and their caregivers, who may experience the process of transition differently. Dissemination of the pediatric transplant transition guideline will make transition information more widely available to transplant practitioners.
Preparing patients for transitioning to self-managed care and subsequently transferring to the adult healthcare system has become a critical process for clinicians working with pediatric transplant recipients. This paper reviews several barriers to a successful transition. These include patient barriers, caregiver barriers, and considerations within pediatric and adult centers. To date, few approaches for improving the transition process have been empirically tested. This review details studies that have examined possible models including usage of a transition coordinator and transition clinics. Recommendations are offered to promote an optimal transition including the importance and content of preparation, assessing and addressing transition readiness, insuring the involvement of all stakeholders, and finally, at minimum providing services during the transfer period. Future directions are offered aiming to advance this important area of investigation.
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