Non Substitutive Strategies to Improve Haemophilia Care in Developing Countries. Experience in Ivory Coast.
Trial Snapshot
- Phase
- Not Applicable
- Status
- Completed
- Sponsor
- Enrollment
- 142
- Locations
- 1
- Primary Endpoint
- Improve haemophilia care in Ivory Coast
Study Overview
Brief Summary
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
- 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
Study Design
- Study Type
- Interventional
- Allocation
- Non Randomized
- Intervention Model
- Single Group
- Primary Purpose
- Other
- Masking
- None
Eligibility Criteria
- Ages
- 12 Years to — (Child, Adult, Older Adult)
- Sex
- All
- Accepts Healthy Volunteers
- No
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.
Arms & Interventions
Carriers for Haemophilia
Carriers for severe and moderate haemophilia A and B in Ivory Coast
Intervention: Education (Other)
Patients with Haemophilia
Male patients with severe and moderate haemophilia A and B in Ivory Coast
Intervention: Education (Other)
Patients with Haemophilia
Male patients with severe and moderate haemophilia A and B in Ivory Coast
Intervention: Improve biological diagnosis and follow-up of haemophilia (Diagnostic Test)
Patients with Haemophilia
Male patients with severe and moderate haemophilia A and B in Ivory Coast
Intervention: Implement haemostatic non substitutive care of haemophilia (Drug)
Patients with Haemophilia
Male patients with severe and moderate haemophilia A and B in Ivory Coast
Intervention: Implement non haemostatic care of haemophilia (Other)
Carriers for Haemophilia
Carriers for severe and moderate haemophilia A and B in Ivory Coast
Intervention: Improve biological diagnosis and follow-up of haemophilia (Diagnostic Test)
Carriers for Haemophilia
Carriers for severe and moderate haemophilia A and B in Ivory Coast
Intervention: Implement haemostatic non substitutive care of haemophilia (Drug)
Outcomes
Primary Outcomes
Improve haemophilia care in Ivory Coast
Time Frame: 2 years after intervention
Compare the pain assessment before and after the intervention phase
Improve haemophilia diagnosis of haemophilia in Ivory Coast
Time Frame: 3 years
Compare the number of patients with haemophilia between the beginning and the end of the study
Improve knowledge about haemophilia in Ivory Coast
Time Frame: 2 years after intervention
Compare the knowledge queestionnaires about haemophilia before and after the intervention phase
Secondary Outcomes
No secondary outcomes reported