Q81
Conditions
Interventions
Group 1: People affected by Epidermolysis bullsosa and their relatives
Sponsors
European Joint Programme Rare Diseases
Eligibility
Sex/Gender
All
Age
8 Years to No maximum
Inclusion criteria
Inclusion criteria: Affected by Epidermolysis bullosa and main care giver
Exclusion criteria
Exclusion criteria: not affected by Epidermolysis bullosa or not main caregiver
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| An online questionnaire study will be conducted. The start of the distribution of the questionnaire is planned for 9/23 and participants can complete the questionnaire until 5/24. Different QoL tests are used depending on age and relation to EB (affected/caregiver). For each age and person group, one generic test (EQ-5D-5L, EQ-5D-Y self-assessment and EQ-5D-Y external assessment) and one disease-specific QoL test are used (QoLEB, CDLQI cartoon version, CDLQI text version and EB-BoD). Main caregiver: EQ-5D-5L & EB-BoD - Affected person > 16 years: EQ-5D-5L - Affected person > 11 years: QoLEB - Affected persons 8-10 years: CDLQI - Affected 8-15 years: EQ-5D-Y (if necessary with the help of parents or caregiver) - Affected 4-7 years: EQ-5D-Y (external assessment by caregiver) & CDLQI (cartoon version) | — |
Secondary
| Measure | Time frame |
|---|---|
| An online questionnaire study will be conducted. The start of the distribution of the questionnaire is planned for 9/23 and participants can complete the questionnaire until 5/24. Besides HRQoL the resource use and the cost of illness will be measured (items were generated by the project consortium): - Use of healthcare and non-healthcare resources - Employment and productivity / Education - Other out-of-pocket expanses - Carer´s employment and productivity | — |
Countries
Austria, Bulgaria, France, Germany, Hungary, Italy, Spain
Contacts
Public ContactCristina Has
Universitätsklinikum Freiburg
Outcome results
None listed