Chronic Pain and Hemophilia

Study Overview
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Brief Summary
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Hemophilia (A and B) are X-linked hereditary bleeding disorders whose severity depends on the level of coagulation factor (FVIII or FIX respectively). Bleeding is mainly from joints (hemarthrosis) and muscles (hematoma). Nowadays, treatment is based on preventive or curative intravenous infusion of coagulation factor concentrates. Despite these treatments, there is joint deterioration that can be responsible for hemophilic arthropathy and chronic pain. This pain may be related to excess nociception during acute bleeding, but it may also be neuropathic. There are only a few studies that have looked at pain in hemophilia, but it is accepted that the vast majority of patients (especially those with severe forms) suffer from chronic pain. Because patients have become accustomed to this pain and physicians are still not very aware of how to assess it, this pain is not treated effectively. In order to better manage pain in hemophilia, it is therefore necessary to characterize their pain and to know the nociceptive or neuropathic component. The aim of our study is therefore to study the prevalence, the nociceptive or neuropathic profile, the chronic aspect of pain and the main locations of pain in hemophilia. In addition to raising the awareness of physicians in the centers about pain management using specific questionnaires, this survey will help to better define chronic pain in hemophilia of all severities.

Detailed Description
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This first French assessment of chronic pain in patients with haemophilia will permit to improve and generate new data about chronic pain related to haemophilia, associated-comorbidities, sociodemographic characteristics and analgesic treatments used. These data will be retrieved using several questionnaires in the RedCap web plateform (eCRF). The study will include 6 investigator centres and a minimum of 350 patients during 12 months.

Official Title
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Status of Chronic Pain in Patients With Hemophilia.

Conditions
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Chronic Pain, Hemophilia

Intervention / Treatment
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* Other: questionnaires


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Patient with haemophilia of any severity, Carrier female with low levels haemophilia (< 40%), ≥ 18 years of age and capable of giving informed consent to participate in research. Exclusion Criteria: Patient's refusal to participate in the survey, Patient does not understand enough French (written and spoken) to complete the survey, Patient unable to complete the survey for logistical reasons (lack of internet access), Patient under protective measures (guardianship), Patients with known addictive comorbidities and/or cognitive disorders.

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Patients with hemophilia<br>all adult patients follow-upin Hospital for hemophilia | Other: questionnaires<br>* Electronic case report form integrating questionnaires on chronic pain related to haemophilia, associated-comorbidities, sociodemographic characteristics and analgesic treatments used.<br>* Other names: RedCap web platform;|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Prevalence of chronic pain disorders | Questionnaire Brief Pain Inventory (BPI) + History of chronic pain (≥ 3 months, Yes or No) | Once | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Impact of chronic pain in daily life | Specific questions + Western Ontario and McMaster University Osteoarthritis (WOMAC) | Once | 
| Analgesic consumption | Type and quantity of analgesic used for treating chronic pain | Once | 
| Anxiodepressive disorders | Hospital Anxiety and Depression scale (HADS) | Once | 
| Sleep disorders | MOS-Sleep scale (MOS-SS) questionnaire | Once | 
| Perceived injustice of chronic pain | Injustice Experience Questionnaire (IEQ) | Once | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Chronic Pain, Hemophilia