Developing Countries, Haemophilia
Conditions
Keywords
Haemophilia
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
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
Interventions
Education of patients and caregivers about haemophilia and carriers of haemophilia.
train the laboratory to the diagnosis ans follow-up un haemophilia
Implement the use of DDAVP and antifibrinolytics in patients with haemophilia and symptomatic carriers
Implement regular physiotherapy, develop dental care, promote the regular use of pain killers
Sponsors
Study design
Intervention model description
monocentric prospective study with longitudinal data collection of a single group
Eligibility
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Improve haemophilia care in Ivory Coast | 2 years after intervention | Compare QoL questionnaires before and after the intervention phase |
| Improve haemophilia diagnosis of haemophilia in Ivory Coast | 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 | 2 years after intervention | Compare the knowledge queestionnaires about haemophilia before and after the intervention phase |
Countries
Côte d’Ivoire