Investigation on the quality of life and patient-centered outcome measures of parents and children with polycystic kidney diseases
Recruiting
- Conditions
- Q61.1Q61.2Polycystic kidney, autosomal recessivePolycystic kidney, autosomal dominant
- Registration Number
- DRKS00021059
- Lead Sponsor
- niversitätsklinikum Freiburg
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- All
- Target Recruitment
- 50
Inclusion Criteria
Children and young adults between 0 and 25 years as well as their caregivers (over 18 years) who are able to understand the interview questions and filll out questionnaires.
Exclusion Criteria
lack of an interpreter when knowledge of German is insufficient to understand interview or questionnaire.
Study & Design
- Study Type
- observational
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method One-time quality of life scores (Pediatric Quality of Life inventory (PedsQL 4.0 including ESRD module), Strengths and Difficulties Questionnaire (SDQ), Impact on Family Scale (IFS), Ulmer Lebensqualitätsinventar für Eltern eines chronisch kranken Kindes (ULQIE)), list of priorities
- Secondary Outcome Measures
Name Time Method