Patient-reported outcome measures in pediatric solid organ transplantation: Exploring stakeholder perspectives on clinical implementation through qualitative description.

PURPOSE: Patient-reported outcome measures (PROMs) are standardized instruments used to collect data about the subjective assessment of medical care from the patient perspective. Implementing PROMs within pediatric clinical settings has gained increasing importance as health services prioritize patient-centred pediatric care. This study explores the perspectives of pediatric solid organ transplant patients, caregivers, and healthcare practitioners (HCPs) on implementing PROMs into clinical practice. METHODS: Qualitative description methods were used to elicit stakeholder perspectives. Semi-structured interviews were conducted across five Canadian transplant centres. Purposive sampling was used to obtain maximum variation across age, gender, and transplant program for all participants, as well as discipline for HCPs. RESULTS: The study included a total of 63 participants [patients (n = 20), caregivers (n = 22) and HCPs (n = 21)]. Nearly all participants endorsed the implementation of PROMs to enhance pediatric transplant clinical care. Three primary roles for PROMs emerged: (1) to bring a transplant patient's overall well-being into the clinical care conversation; (2) to improve patient communication and engagement; and, (3) to inform the practice of clinical pediatric transplant care. Insights for effective implementation included completing electronic PROMs remotely and prior to clinical appointments by patients who are eight to 10 years of age or older. CONCLUSIONS: This study contributes to current research that supports the use of PROMs in clinical pediatric care and guides their effective implementation into practice. Future directions include the development, usability testing, and evaluation of a proposed electronic PROM platform that will inform future research initiatives.

The iPeer2Peer mentorship program for adolescent thoracic transplant recipients: An implementation-effectiveness evaluation.

BACKGROUND: An increase in self-management skills for adolescent thoracic transplant recipients may improve health outcomes and facilitate a successful transition to adulthood. The iPeer2Peer program is an online peer mentorship program that has been successfully implemented as a self-management intervention in multiple chronic disease populations. This study aimed to determine the implementation and effectiveness outcomes of the iPeer2Peer program for adolescent thoracic transplant recipients. METHODS: A type III, hybrid implementation-effectiveness pilot study that comprised a quasi-experimental single-arm pre-post design was used to evaluate the iPeer2Peer program. Participant mentees, ages 12-17, were recruited from 2 large Canadian transplant centers. Peer mentors, ages 18-25, were thoracic transplant recipients who had successfully transitioned to adult care and self-manage their condition. A mixed methods approach for data collection was used, including interviews, focus groups, and standardized questionnaires. RESULTS: Twenty mentees (median 15.0 years, IQR 3.3 years; 65% female) completed the iPeer2Peer program with 9 young adult mentors (median 21.0 years, IQR 3.0 years; 78% female). Implementation outcomes indicated that the iPeer2Peer program was perceived as feasible, adoptable, acceptable, and appropriate for adolescent thoracic transplant recipients. Significant findings were noted in mentees for increased self-management and a decrease in overall depression and anxiety symptoms. CONCLUSIONS: The successful implementation of the pilot iPeer2Peer program offers support to evaluate the scalability, sustainability, and cost-effectiveness of the program for adolescents with chronic illness, specifically thoracic transplant recipients. Changes to the iPeer2Peer program that facilitate a flexible delivery may help implementation and acceptance.