Non Substitutive Strategies to Improve Haemophilia Care in Developing Countries. Experience in Ivory Coast.
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 142
- 试验地点
- 1
- 主要终点
- Improve haemophilia diagnosis of haemophilia in Ivory Coast
研究概览
简要总结
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.
详细描述
- 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
研究设计
- 研究类型
- Interventional
- 分配方式
- Non Randomized
- 干预模型
- Single Group
- 主要目的
- Other
- 盲法
- None
入排标准
- 年龄范围
- 12 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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.
排除标准
- •subjects not willing to participate.
研究组 & 干预措施
Patients with Haemophilia
Male patients with severe and moderate haemophilia A and B in Ivory Coast
干预措施: Implement haemostatic non substitutive care of haemophilia (Drug)
Patients with Haemophilia
Male patients with severe and moderate haemophilia A and B in Ivory Coast
干预措施: Implement non haemostatic care of haemophilia (Other)
Carriers for Haemophilia
Carriers for severe and moderate haemophilia A and B in Ivory Coast
干预措施: Education (Other)
Patients with Haemophilia
Male patients with severe and moderate haemophilia A and B in Ivory Coast
干预措施: 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
干预措施: Education (Other)
Carriers for Haemophilia
Carriers for severe and moderate haemophilia A and B in Ivory Coast
干预措施: Implement haemostatic non substitutive care of haemophilia (Drug)
Carriers for Haemophilia
Carriers for severe and moderate haemophilia A and B in Ivory Coast
干预措施: Improve biological diagnosis and follow-up of haemophilia (Diagnostic Test)
结局指标
主要结局
Improve haemophilia diagnosis of haemophilia in Ivory Coast
时间窗: 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
时间窗: 2 years after intervention
Compare the knowledge queestionnaires about haemophilia before and after the intervention phase
Improve haemophilia care in Ivory Coast
时间窗: 2 years after intervention
Compare the pain assessment before and after the intervention phase
次要结局
未报告次要终点