Transition

Home dialysis is encouraged in Canada and peritoneal dialysis is the most common home dialysis method. However, many patients discontinue peritoneal dialysis, often transferring to hemodialysis. Despite the frequency of this transition, little is known about its impact on patients. Overall, the UPLIFT-PD program aims to fill this gap by studying the transition from peritoneal dialysis to hemodialysis. The specific goal of this mixed methods sub-study is to conduct a national survey to ask patients and caregivers about priorities and preferences when they anticipate a transfer from peritoneal dialysis to hemodialysis. This survey will be co-created by patient-partners and dialysis experts. Results from this survey will then be used in other phases of UPLIFT-PD program, detailed in other registrations, which will support people facing a transition from peritoneal dialysis to hemodialysis..

Main aims of this project are * To assess the baseline status-quo of transition and "fitness for transfer" in terms of information about the adult centre and team, organisational and practical skills (blood sampling and sending, how to make an appointment etc.), disease- and treatment-related knowledge, health-related quality of life (HrQoL), and self-efficacy in adolescnets with inborn errors of metabolism. Biochemical or physical parameters as appropriate for the respective diseases from 12 months before are documented. * To provide targeted, structured intervention modules (using available and, if necessary, adapted materials). * To measure the effects of these interventions on information about adult services short-term (within a month) and to re-assess all other baseline status-quo parameters long-term (6 and 12 months later). Psychological assessments will be complemented by biochemical or physical parameters as appropriate for the respective diseases and indicative for transition success.

The Aftercare of Childhood Cancer Survivors in Switzerland (ACCS) study is a multicenter cohort study designed to investigate transition of follow-up care from pediatric oncology to adult care in a prospective and longitudinal way. The investigators collect data on preferences and expectations for follow-up care and transition to adult care by questionnaires in adolescent and young adult survivors of childhood cancer.