von Willebrand Disease (any known subgroup) Haematological Disorders
Conditions
Interventions
All participants will be asked to complete an online survey. 30 participants will also be asked to take part in a single semi-structured qualitative interview. 50 participants will be asked to complet
Sponsors
Haemnet
Eligibility
Sex/Gender
All
Age
16 Years to 100 Years
Inclusion criteria
Inclusion criteria: 1. Adults aged 16 years and above (UK and Ireland) and adults aged over 18 years (in USA) with a confirmed diagnosis of inherited vWD of known diagnostic subtype and vWF level. 2. For the qualitative interview-based substudy, 30 adults who have completed the survey and who wish to be interviewed will be purposively selected for a broad range of ages and diagnostic subtype. 3. For the bleed diary substudy, 50 adults who have completed the survey and who wish to take part will be purposively selected for a broad range of ages and diagnostic subtype.
Exclusion criteria
Exclusion criteria: 1. Have acquired vWD 2. Have other inherited bleeding disorders 3. Do not wish to participate in or to consent to the study. 4. Are under 16 years old (UK & Ireland) or 18 years old (US). 5. Those for whom written/spoken English would prohibit participation will also be excluded.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Bleeding rates, daily activities, pain/discomfort and anxiety/depression will be measured using a retrospective, self-reported, validated survey (EQ-5D, Menstrual Impact Questionaire (for women) PHQ8 and GAD 7). This data will also be recorded prospectively using a 30 day bleed dairy. | — |
Secondary
| Measure | Time frame |
|---|---|
| Treatment satisfaction and assessment of unmet needs will be measured through analysis of the descriptive interview narratives of the lives of people with vWD collected at a single time point | — |
Countries
England, Ireland, United Kingdom, United States of America
Outcome results
None listed