Patient satisfaction, cost effectiveness, Qualtity of life, home-based treatment
Conditions
Interventions
A questionnaire is filled in by patients. No intervention will be given because the patients are already using eculizumab.
Sponsors
Radboud University Nijmegen Medical Centre (RUNMC)
Eligibility
Inclusion criteria
Inclusion criteria: 1. PNH patients treated with eculizumab; 2. Aged >= 18 years; 3. Informed consent.
Exclusion criteria
Exclusion criteria: No informed consent.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Satisfaction of patients (home care versus intramural administration) determined by a treatment satisfaction questionnaire. | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Quality of life (EORTC and Facit Fatigue scale); 2. Resource utilisation; 3. Indirect costs (productivity losses); 4. Utility assessments (EQ-5D); 5. Clinical outcomes: safety and sustained reduction of hemolysis; 6. Quality control. | — |
Contacts
Public ContactM. Reen, van
RUNMC, dep of Hematology
Outcome results
None listed