OTHER
Education
Education of patients and caregivers about haemophilia and carriers of haemophilia.
Non Substitutive Strategies to Improve Haemophilia Care in Developing Countries. Experience in Ivory Coast.
Status
Completed
Phase
Not applicable
Enrollment
142
Locations
1
Results
Not posted
Publications
0
Study summary
What the protocol is testing.
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 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
Treatment arms and agents.
DIAGNOSTIC_TEST
Improve biological diagnosis and follow-up of haemophilia
train the laboratory to the diagnosis ans follow-up un haemophilia
DRUG
Implement haemostatic non substitutive care of haemophilia
Implement the use of DDAVP and antifibrinolytics in patients with haemophilia and symptomatic carriers
OTHER
Implement non haemostatic care of haemophilia
Implement regular physiotherapy, develop dental care, promote the regular use of pain killers
Timeline
From registration to results.
First posted
Feb 15, 2017
Study start
Jan 16, 2017
Primary completion
Dec 31, 2018
Study completion
Sep 17, 2019
Results posted
Not reported
Registry updated
Sep 27, 2019
Outcomes
What the study measures.
Primary outcomes
Improve haemophilia care in Ivory Coast
Time frame · 2 years after intervention
Compare QoL questionnaires 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 haemophilia care in Ivory Coast
Time frame · 2 years after intervention
Compare the pain assessment before and after the intervention phase
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
Not reported in the indexed record.
Eligibility
Who can take part.
- Minimum age
- 12 Years
- Maximum age
- Not reported
- Sex
- ALL
- 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.
Study locations
1 registered sites.
Côte d’Ivoire. Showing up to 24 locations stored in the fast local snapshot.
CHU de Yopougon
Abidjan, Côte d’Ivoire
Publications
Results and literature.
No PMID-linked publications were present in this registry snapshot.
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