Non Substitutive Strategies to Improve Haemophilia Care in Developing Countries. Experience in Ivory Coast.

Study Overview
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Brief Summary
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This study aims to make an inventory of the condition and care of patients with haemophilia and carriers for haemophilia in Ivory Coast and to promote the use non substitutive strategies that are not costly and available in Ivory Coast, to improve the management of haemophilia in this country. The purpose of this project is to evaluate the extent to which the active promotion of these various measures will improve the care of patients with haemophilia and carriers in Ivory Coast.

Detailed Description
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Establish a baseline of the condition of haemophilia in Ivory Coast (number of patients, demographics, reassessment of diagnosis, joint status...).(year 1) Develop tools to assess the intervention (eg transcultural validation of QoL questionnaires, develop booklets to record bleedings...). (year 1) Intervention phase that will focus on education of patients and their family, education of caregivers, training of the laboratory to the diagnosis of haemophilia and promotion of non substitutive strategies to improve haemophilia care in Ivory Coast (DDAVP, antifibrinolytics, physiotherapy, dental care,...). Follow-up phase during 2 years. Outcome analysis

Official Title
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Non Substitutive Strategies to Improve Haemophilia Care in Developing Countries. Experience in Ivory Coast.

Conditions
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Haemophilia, Developing Countries

Intervention / Treatment
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* Other: Education
* Diagnostic Test: Improve biological diagnosis and follow-up of haemophilia
* Drug: Implement haemostatic non substitutive care of haemophilia
* Other: Implement non haemostatic care of haemophilia


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Males with severe and moderate haemophilia A and B in Ivory Coast (any age). Females over 12 years who are carriers for severe and moderate haemophilia A and B in Ivory Coast. Exclusion Criteria: subjects not willing to participate.

Ages Eligible for Study
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Minimum Age: 12 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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Design Details

Primary Purpose: Other
Allocation: Non-Randomized
Intervention Model: Single Group Assignment
Interventional Model Description: monocentric prospective study with longitudinal data collection of a single group
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Patients with Haemophilia<br>Male patients with severe and moderate haemophilia A and B in Ivory Coast | Other: Education<br>* Education of patients and caregivers about haemophilia and carriers of haemophilia.<br>Diagnostic Test: Improve biological diagnosis and follow-up of haemophilia<br>* train the laboratory to the diagnosis ans follow-up un haemophilia<br>Drug: Implement haemostatic non substitutive care of haemophilia<br>* Implement the use of DDAVP and antifibrinolytics in patients with haemophilia and symptomatic carriers<br>Other: Implement non haemostatic care of haemophilia<br>* Implement regular physiotherapy, develop dental care, promote the regular use of pain killers<br>* Other names: Physiotherapy, dental care, pain killers;|
| Experimental: Carriers for Haemophilia<br>Carriers for severe and moderate haemophilia A and B in Ivory Coast | Other: Education<br>* Education of patients and caregivers about haemophilia and carriers of haemophilia.<br>Diagnostic Test: Improve biological diagnosis and follow-up of haemophilia<br>* train the laboratory to the diagnosis ans follow-up un haemophilia<br>Drug: Implement haemostatic non substitutive care of haemophilia<br>* Implement the use of DDAVP and antifibrinolytics in patients with haemophilia and symptomatic carriers<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Improve haemophilia care in Ivory Coast | Compare QoL questionnaires before and after the intervention phase | 2 years after intervention | 
| Improve haemophilia diagnosis of haemophilia in Ivory Coast | Compare the number of patients with haemophilia between the beginning and the end of the study | 3 years | 
| Improve haemophilia care in Ivory Coast | Compare the pain assessment before and after the intervention phase | 2 years after intervention | 
| Improve knowledge about haemophilia in Ivory Coast | Compare the knowledge queestionnaires about haemophilia before and after the intervention phase | 2 years after intervention | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Haemophilia