Education, enjoyment, and empowerment: Outcomes of an adolescent transplant camp (I own it).

Peer group camping experiences have a positive influence on adolescents with chronic illnesses, but the data in solid organ transplant recipients are lacking. The aim of this study was to evaluate the outcomes of adolescent transplant attendees of an educational camp. A weekend camp, "I own it" was organized which provided educational training regarding career and health choices, money matters, and managing medications following which a knowledge assessment was performed. The ACLSA questionnaire was also administered. To test the adolescents' medication knowledge, they were asked to provide written documentation of their medications, which was compared with their medical records. In the ACLSA questionnaire, 32% reported deficiency in work/study, 46% in housing/money management, and 3% in the remaining categories. A significant improvement in knowledge was noted in areas of career choices, money matters, and managing medications, but not in healthy choices. In the medication recall, 75% did not know their medication list, and 92% could not recall dosages or frequencies. In conclusion, adolescents showed quantitative improvements in certain areas while identifying deficiencies in others, areas which were targeted in future initiatives. Prospective longitudinal studies addressing the impact of camps on post-transplant outcomes should be conducted to better alter the course post-transplant.

Growing Up: Not an Easy Transition-Perspectives of Patients and Parents regarding Transfer from a Pediatric Liver Transplant Center to Adult Care.

The transition from pediatric to adult care is a critical time when children with chronic illness sustain high morbidity and mortality. Transition services need to be focused on the adolescents' needs, which may differ from those perceived by healthcare providers. In this study, a survey of 31 patients with chronic liver disease and/or liver transplant who were "transferred" to adult services within the last 3 years was conducted. Patients were asked about their current health status and their perceptions of the overall transfer process. The mean age at transfer was 19.81 (18-21) years. Almost half the patients (47%) were not seen at the adult facility until 2-6 months after leaving the Children's hospital and 20% were not seen until 6-12 months. About 20% had their first contact with adult services through an emergency room visit. About 19% reported being out of medication during transition. Of the transplanted patients, 19% were being evaluated for a retransplant. The majority (82%) felt that an increased emphasis on promoting independence and "letting go" both by parents and by pediatric care providers was critical in their transition to independence and adult care services. This study provides thought-provoking insights, which are critical in designing the ideal transition program for children with chronic diseases.