Health Related Quality of Life (HrQoL) in Classical Homocystinuria (CBS Deficiency)
Development and Validation of a Standardized Assessment Instrument for Health-related Quality of Life (HrQoL) in Patients With Classical Homocystinuria
University Children's Hospital, Zurich
80 participants
Jan 15, 2025
OBSERVATIONAL
Conditions
Summary
Patients, parents of young / handicapped patients, and experts will be interviewed to collect contents relevant for HrQoL in CBS deficiency. Based on these data, a questionnaire will be developed and tested for comprehensibility in patients and parents of young / handicapped patients. A final questionnaire version will be tested for psychometric criteria including validity and reliability.
Eligibility
Inclusion Criteria5
- Patients with CBS deficiency from age 8 years
- Parents of patient(s) < 18 years with cognitive impairment
- Parents of patients between age 4 and 7
- Experts on CBS deficiency
- Able to give informed consent as documented by signature
Exclusion Criteria1
- \- Sufficient command of the German or the English language
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Interventions
Interviews, presentation of questionnaires
Locations(1)
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NCT06556615