Targeted Interventions for Successful Transition and Transfer of Adolescents With Inborn Errors of Metabolism to Adult Services

Launched by UNIVERSITY CHILDREN'S HOSPITAL, ZURICH · Jun 7, 2022

Keywords

ClinConnect Summary

This clinical trial is focused on helping teenagers with inborn errors of metabolism transition smoothly from pediatric to adult healthcare services. The researchers aim to understand how well these young patients are prepared for this change by assessing their knowledge about adult care, practical skills like making appointments, and their overall health and confidence. They will also provide structured support and resources to help improve these areas.

To participate in this trial, individuals should be at least 14 years old and currently receiving care for a metabolic condition in a specialized clinic. They need to have a clear disease marker that doctors can measure. Participants will be involved in evaluations to see how the support affects their readiness for adult care both shortly after the intervention and again six to twelve months later. Importantly, the study is actively recruiting and welcomes patients of all genders, offering an opportunity for them to gain valuable skills for their health journey.

Gender

ALL

Eligibility criteria

• • Inclusion Criteria:Patients
• • with an inborn error of metabolism in the care of a specialized metabolic care unit
• • requiring specialized adult metabolic care
• • at least 14 years old
• • with a disease for which at least one biochemical and / or physical parameter disease marker is well established .
• Exclusion Criteria:
• • Patients -
• • with insufficient knowledge of the German
• • with cognitive impairment to a degree that consent, and participation would be impossible
• • in an end-of-life situation
• • with a disease for which no biochemical and / or physical parameter disease marker is well established