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

University of Zurich (UZH)

Status

Enrolling

Conditions

Transition

Inborn Errors of Metabolism

Treatments

Behavioral: Behavioral

Study type

Interventional

Funder types

Other

Identifiers

Fit_for_transfer

Details and patient eligibility

About

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.

Enrollment

20 estimated patients

Sex

All

Ages

14 to 25 years old

Volunteers

No Healthy Volunteers

Inclusion and exclusion 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