National Survey of People With Haemophilia in Portugal

Study Overview
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Brief Summary
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The purpose of this study is to implement a national survey to collect information regarding Portuguese people with haemophilia (PWH) on socio-demographic, clinical and psychosocial factors.

Detailed Description
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This is a cross-sectional design investigation focused on the socio-demographic, clinical and psychosocial characterization of Portuguese people with haemophilia (PWH). All PWH, registered in the Portuguese Hemophilia Association (APH) will be identified in APH registries and contacted through mail, in order to be invited to participate in the first Portuguese survey on haemophilia. In case of acceptance, patients must sign the Informed Consent, fill in the questionnaires and send both back to the investigation team through a pre-paid envelope in the national mail system. PWH of all ages are invited to participate in this survey. Adults (aged 18 and over) and children/youth from 10 to 17 will answer the questionnaires by self report. Parents of small children (0 to 9) will fill in the proxy versions. All questionnaires are adapted for the specific age groups. This study will comply with ethic guidelines and was approved by the Life Sciences and Health Ethics Subcommittee (University of Minho) and is registered on the Portuguese authority for data collection (CNPD).

Official Title
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Sociodemographic, Clinic and Psychosocial Aspects of People With Haemophilia in Portugal: a National Survey

Conditions
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Haemophilia

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Haemophilia A or B Portuguese nationality Exclusion Criteria: Acquired Haemophilia Psychiatric or neurological deficit
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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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Health Related Quality of Life in Adults as assessed by A36Hemofilia-Qol |  | 1 year | 
| Health Related Quality of Life in Children as assessed by Canadian Haemophilia Outcomes-Kids Life Assessment Tool | Health Related Quality of Life in Children | 1 year | 
| Pain Intensity | Pain Questionnaire developed specifically for this investigation to assess PWH (based on Wallny's Pain Questionnaire for PWH and Brief Pain Inventory). | 1 year | 
| Pain Location | Pain Questionnaire developed specifically for this investigation to assess PWH (based on Wallny's Pain Questionnaire for PWH and Brief Pain Inventory). | 1 year | 
| Pain Duration | Pain Questionnaire developed specifically for this investigation to assess PWH (based on Wallny's Pain Questionnaire for PWH and Brief Pain Inventory). | 1 year | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Total score of Haemophilia-related functional limitations as assessed by Haemophilia Activities List (HAL) and Pediatric HAL |  | 1 year | 
| Anxiety score as assessed by PROMIS-Anxiety Short Form v1.0 | Assessmet of Anxiety | 1 week | 
| Depression score as assessed by PROMIS-Depression Short Form v1.0 |  | 1 week | 
| Illness Perception as assessed by IPQ-R |  | 1 year | 
| Pain Catastrophizing as assessed by CSQ - Catastrophizing Subscale |  | 1 year | 
| Number of Joint Bleeds |  | 1 year | 
| Presence of inibitors |  | 1 year | 
| Number of target joints |  | 1 year | 
| Type of sports practiced by PWH |  | 1 year | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Haemophilia, Quality of Life, Distress, Hemarthrosis, Pain