Chronic pain in people with severe haemophilia Haematological Disorders Hereditary factor VIII deficiency, Hereditary factor IX deficiency
Conditions
Interventions
This is a feasibility study design with no randomisation included.
The intervention consists of a 12-session, low impact, moderate-intensity exercise programme. Each participant will have a personal
Sponsors
Royal Free London NHS Foundation Trust
Eligibility
Sex/Gender
Male
Inclusion criteria
Inclusion criteria: 1. People with severe haemophilia A or B (with or without an inhibitor) 2. Aged 18 years and over 3. Self-reported symptoms of chronic pain associated with haemophilic arthropathy (any joint) 4. Willing and able to give informed consent for participation in this study 5. Able to follow instructions 6. Have a good command of written and spoken English 7. Registered at a UK located haemophilia comprehensive care centre with a named physiotherapist 8. Have access to a laptop/tablet at home and sufficient internet connection
Exclusion criteria
Exclusion criteria: 1. Mild or moderate haemophilia A or B 2. Any other inherited bleeding disorder 3. A diagnosis of chronic pain that is not associated with haemophilic arthropathy 4. Severe and/or unstable cardiovascular disease 5. Severe and/or unstable pulmonary disease 6. Uncontrolled diabetes mellitus
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The feasibility aspects of the intervention will be evaluated as follows: 1. Recruitment rate (% uptake) 2. Adherence rate to the intervention procedures 3. Acceptability of the intervention 4. Attrition due to the intervention 5. Safety of the intervention 6. Loss to follow up All will be evaluated from data from screening/recruitment logs, attendance records, participant diaries, participant interviews and review of any recorded adverse events at the end of the study intervention | — |
Secondary
| Measure | Time frame |
|---|---|
| Measured at baseline, week 6 and week 18: 1. Severity and impact of pain measured using the Brief Pain Inventory (BPI) 2. Confidence to be active even with pain measured using the Pain Self Efficacy Questionnaire (PSEQ) 3. Health-related quality of life measured using the EQ 5D 5L questionnaire 4. Pain and quality of life with arthritic joint pain measured using the Musculoskeletal Health Questionnaire (MSK-HQ) 5. Impact of haemophilia on perceived physical function measured using the Haemophilia Activities List (HAL) 6. Self-reporting functional goals for rehabilitation measured using the Patient-Specific Functional Scale (PSFS) 7. Rating change in one's own clinical status measured by Patient Global Impression of Change (PGIC) | — |
Countries
England, United Kingdom
Outcome results
None listed