athropathy joint damage
Conditions
Interventions
None listed
Sponsors
Universitair Medisch Centrum Utrecht
Eligibility
Age
2 Years to 99 Years
Inclusion criteria
Inclusion criteria: Patients with moderate or severe VWD who participated in the *Willebrand in Nederland* (WiN) study and who reported treatment with coagulation factor or desmopressin for 1 or more joint bleeds (patients) Patients with moderate or severe VWD who participated in the *Willebrand in Nederland* (WiN) study and did not report treatment with coagulation factor or desmopressine for 1 or more joint bleeds (controls) Patients with moderate or severe VWD who are currently treated at a haemophilia treatment centre in the Netherlands with or without a history of coagulation factor or desmopressin for 1 or more joint bleeds Comprehension of the Dutch written and spoken language
Exclusion criteria
Exclusion criteria: Inability of the patient or the patients parents to give informed consent Active joint pathology (i.e. recent episode of joint haemorrhage) Restricted motion of an ankle, knee or elbow joint for another medical reason No medical file available Age 4 years or younger
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Existence of arthropathy: the number and percentage of patients with arthropathy among the different patient groups. Severity of arthropathy: separate and cumulative scores of HJHS and Pettersson. Impact of arthropathy on physical functioning and participation: time to complete the figure 8 walking test, separate and cumulative scores of (Ped)HAL and IPA questionnaires. Impact on quality of life: separate and cumulative scores of D-AIMS2-affect and MPQ-DLV questionnaires. | — |
Secondary
| Measure | Time frame |
|---|---|
| Influence of the severity of the coagulation defect on the existence, severity and impact of arthropathy Number and sites of affected joints Quantitative use of desmopressin and coagulation factors in relation to the existence of arthropathy Prophylactic use of coagulation factors in relation to the existence of arthropathy Influence of age, BMI, quantitative use of desmopressin and coagulation factors, surgical interventions and sports activities on the existence, severity and impact of arthropathy | — |
Countries
Netherlands
Outcome results
None listed