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

Cliniques universitaires Saint-Luc- Université Catholique de Louvain

Status: Completed

Conditions: Haemophilia; Developing Countries

Treatments: 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

Study type: Interventional

Funder types: Other

Identifiers

NCT03054662

002/MSHP/CNER-kp

Details and patient eligibility

About

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.

Full description

1. Establish a baseline of the condition of haemophilia in Ivory Coast (number of patients, demographics, reassessment of diagnosis, joint status...).(year 1)
2. Develop tools to assess the intervention (eg transcultural validation of QoL questionnaires, develop booklets to record bleedings...). (year 1)
3. 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,...).
4. Follow-up phase during 2 years.
5. Outcome analysis

Enrollment: 142 patients

Sex: All

Ages: 12+ years old

Volunteers: No Healthy Volunteers

Inclusion and exclusion criteria

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.

Trial design

Primary purpose: Other

Allocation: Non-Randomized

Interventional model: Single Group Assignment

Masking: None (Open label)

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142 participants in 2 patient groups

Patients with Haemophilia

Experimental group

Description:

Male patients with severe and moderate haemophilia A and B in Ivory Coast

Treatment:

Other: Implement non haemostatic care of haemophilia

Other: Education

Drug: Implement haemostatic non substitutive care of haemophilia

Diagnostic Test: Improve biological diagnosis and follow-up of haemophilia

Carriers for Haemophilia

Experimental group

Description:

Carriers for severe and moderate haemophilia A and B in Ivory Coast

Treatment:

Other: Education

Drug: Implement haemostatic non substitutive care of haemophilia

Diagnostic Test: Improve biological diagnosis and follow-up of haemophilia