Disease experience, medication intake, and emergency management of guardians of paediatric patients with metabolic disorders including medication analysis
Recruiting
- Conditions
- Genetically determined metabolic diseases
- Registration Number
- DRKS00022343
- Lead Sponsor
- niversität Leipzig
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- All
- Target Recruitment
- 152
Inclusion Criteria
Written consent of parents (or guardians) to participate in the study
- Diagnosis of a genetic metabolic disorder
- Sufficient knowledge of the German language to participate in the survey
- Sufficient ability to understand the questions
Exclusion Criteria
- Refusal of participation by the patient or parents (or guardians)
- No guardian present
- Refusal of participation by the attending physician of the study centre
- No fulfilment of the other inclusion criteria
Study & Design
- Study Type
- observational
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method 1) Parents' subjective perception of their disease experience, medication intake, and emergency management via telephone interview<br>2) Results of the medication analysis
- Secondary Outcome Measures
Name Time Method