haemophilia, Home treatment, prophylaxis, intravenous infusion, learningprocess.
Conditions
Interventions
This study comprises a retro- and prospective observational study which is combined with a nursing consultation. The present project will expand the regular nursing consultation with a history, timing
Sponsors
University Medical Centre Utrecht
Heidelberglaan 100, PO box 85500
3508 GA Utrecht, the Netherlands
Eligibility
Inclusion criteria
Inclusion criteria: 1. All haemophilia or Von Willebrand type III patients or caretakers of children (with or without CVAD) treated with prophylaxis (possible learning for self infusion); 2. Patients who are treated at the van Creveldkliniek Utrecht, Haemophilia Treatment Centre Amsterdam, or Erasmus Medical Centre Rotterdam, in the estimated period from of 3 years.
Exclusion criteria
Exclusion criteria: Patients who are treated on demand.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Quantification of the learning process of self infusion and the self infusion procedure, that will serve as a base-line for futher research to improve adherence. | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Time needed to learn to administer prophylaxis; 2. Timing of self infusion; 3. Proportion of infusions taken in the mornings in comparison with the bleeding frequency; 4. Age at which transition takes place. | — |
Contacts
Public ContactL.H. Schrijvers
PO box 85500
Outcome results
None listed