Assessing the acceptability and efficacy of teens taking charge: Transplant-A pilot randomized control trial.

BACKGROUND: Adolescents who have undergone SOT are at heightened risk for graft failure. This pilot randomized controlled trial aimed to determine the feasibility and obtain preliminary estimates of efficacy of the online TTC program. METHODS: TTC is a web-based self-management program for adolescent SOT patients. Participants-kidney or liver transplant candidates or recipients-were enrolled over a 2-year period and randomized to either an intervention group that accessed TTC or a control group that did not access the program. Outcome measures included feasibility, how much the program was utilized, and pre- and post-intervention health-related outcomes evaluating self-management, self-efficacy, mood, use of healthcare services, and knowledge. Semi-structured interviews were conducted with participants post-intervention. RESULTS: Forty-two participants were enrolled in the study. Participants in the intervention group expressed that they enjoyed learning about other teens' experiences, but reported barriers to accessing the site, such as being too busy, computer being too slow, and not being able to access the site on their mobile device. Time spent using the website was low for the majority of participants. Patients less than 1-year post-transplant accessed TTC more than patients who had their transplant for longer. No significant differences were found for health-related outcomes between groups. CONCLUSIONS: No differences in health-related outcomes were found between groups. Further studies that examine barriers to engagement with web-based education tools are warranted.

Exploring the information needs of adolescents and their parents throughout the kidney transplant continuum.

CONTEXT: Adolescents are at higher risk for organ loss than are all other age groups, but no studies have been conducted to examine the specific information needs of adolescents. A better understanding of adolescents' information needs is essential for developing programs tailored to their unique requirements. OBJECTIVE: To explore information needs of adolescents who have undergone kidney transplantation in order to inform development of an education program. DESIGN: A qualitative descriptive design was used. Focus groups (n = 2) were conducted by using a semistructured interview guide. Transcribed data were organized into categories that reflected emerging themes by using simple content analysis. PARTICIPANTS AND SETTING: A convenience sample of 8 adolescents (50% female) who varied in age, donor type, and time since transplantation were recruited from a large Canadian tertiary care pediatric center. RESULTS: Adolescents articulated that the process of undergoing kidney transplant was very stressful and affected all aspects of their lives. In particular, adolescents identified 4 main stressors: changes in body image, wanting to be normal, pain, and breakdown in communication processes. The 2 strategies that assisted adolescents in coping with these stressors were (1) gaining knowledge about the transplantation process and (2) experiencing understanding through social support. They wanted information provided to them gradually throughout the transplant experience with choices given as to how they receive the information. CONCLUSION: Adolescents were united in their call for information, self-management strategies, and meaningful social support to better manage their kidney transplant and prepare for transition to adult health care.

Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation.

Kidney transplantation is an optimal therapy for pediatric patients with end-stage kidney disease. This pilot study sought to examine multidimensional QOL outcomes after kidney transplant using VAQOL and General Health, the PedsQL 4.0, PedsQL End Stage Renal Disease Module, and Impact on Family Module. Sample included 12 adolescents aged 13-18 yr and their parent; three children aged eight to 12 yr and their parent; and six parents of children aged two to seven yr. All were 73 months post transplant. The median age at transplant was 9.3 yr and median time since transplant was 3.2 yr. VAQOL mean was 7.7/10 (child report) and 7.3/10 (parent report); the mean general health was 7.4/10. High levels of fatigue (> or =5/10) were reported in 43%. PedsQL subscale mean values were lower than healthy reference scores. PedsQL Renal Module demonstrated great concern with physical appearance and physical symptoms (thirst and headaches), difficulty with peer and family interaction, and school disruption. Low scores on parental emotional function depict the negative impact of transplant on family functioning. Discordance exists between child and parental reports of QOL. Prospective studies are needed to explore multidimensional QOL to improve long-term outcomes after pediatric kidney transplant.

Pediatric kidney transplantation: growth, development, and nursing implications.

The complex issues related to the growth and development of pediatric kidney transplant recipients are explored in this paper. We divide the pediatric population into 3 age groups--toddlers and preschoolers, school age children, and adolescents--and review the literature describing growth and development in kidney transplant recipients and the normal population briefly for each age group. Planning and delivery of nursing care that is based on the implications of growth and development are discussed, and have relevance for all allied healthcare professionals caring for pediatric kidney transplant recipients and their parents. Allied healthcare professionals in adult settings who provide care to recipients who received a transplant before the age of 18 may also benefit from reviewing this article.