Targeted Interventions for Successful Transition and Transfer of Adolescents With Inborn Errors of Metabolism to Adult Services
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Behavioral.
- Who it may be relevant to
- Registry conditions: Transition, Inborn Errors of Metabolism. Basic parameters: 14 years — 25 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Austria, Switzerland
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
Fit for Transfer: Targeted Interventions for Successful Transition and Transfer of Adolescents With Inborn Errors of Metabolism to Adult Metabolic Services
Overview
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.
Interventions
- Behavioral Behavioral
Patient education, information and empowerment
Primary outcome measures
- Disease knowledge [Time frame: change from baseline to 1 month]
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Allocation
- N/A
- Model
- Single group
- Masking
- Open label
- Primary purpose
- Supportive care
Study locations
Switzerland · 6 centers
- University Childrens Hospital Basel — Basel
- University Hospital Basel — Basel
- University Childrens Hospital Bern — Bern
- University Hospial Bern — Bern
- University Childrens Hospital Zürich — Zurich
- University Hospital Zurich — Zurich
Austria · 2 centers
- University Childrens Hospital Vienna — Vienna
- University Hospital Vienna — Vienna
Identifiers
NCT: NCT05413278 · Fit_for_transfer