Quantitative and qualitative analysis of quality of life (QOL) of people with hemophilia in an Indian Setting
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 165
- 试验地点
- 1
- 主要终点
- QOL through quantitative data analysis.
研究概览
简要总结
The Hemophilia Society, Manipal chapter is one of the 91 chapters in India affiliated to theHemophilia Federation, India(HFI). HFI gathers basic data on hemophilia and other bleedingdisorders through the chapters which forms the basis for the global survey data from India.There are also governmental registries in the state which collect basic data of person withhemophilia(pwh) visiting government hospitals and chapters. However, it all amounts to dataon basic demographics, treatment and complications. Genetic analysis, functional outcomesand quality of life (QOL) in hemophilia are rarely studied and are not part of any registry otherthan WBDR. These are important for the prevention and progress in hemophilia care in acountry.The data on the functional outcome and quality of life (QOL) is hence proposed to be collected.This study is also a preliminary study without genetic testing to identify discrepancies in clinicaland laboratory severity which in turn can also alter the QOL In addition to the quantitative dataon QOL, qualitative data will be collected which will help in understanding the livingexperiences of pwh. This will also help to look at measures to improve the functional outcomeof pwh.
研究设计
- 研究类型
- Observational
入排标准
- 年龄范围
- 1.00 Year(s) 至 80.00 Year(s)（—）
- 性别
- All
入选标准
- •Patient diagnosed with hemophilia A, B &C based on confirmatory factor assay will be included.
排除标准
- •Patient will be not included if family member of the child or / care taker / patient do not give consent to participate in registry Suspected cases without confirmed diagnosis will also be excluded.
结局指标
主要结局
QOL through quantitative data analysis.
时间窗: quality of life parameters will be assessed using questionnaires and structured interviews with all the participants twice during the study. This will be done during first year and later after one year.
reasons and
时间窗: quality of life parameters will be assessed using questionnaires and structured interviews with all the participants twice during the study. This will be done during first year and later after one year.
complexities of their disease in-depth and will be able to assess the living environment of
时间窗: quality of life parameters will be assessed using questionnaires and structured interviews with all the participants twice during the study. This will be done during first year and later after one year.
the pwh in a holistic manner.
时间窗: quality of life parameters will be assessed using questionnaires and structured interviews with all the participants twice during the study. This will be done during first year and later after one year.
severity of hemophilia with the five domains that describe the
时间窗: quality of life parameters will be assessed using questionnaires and structured interviews with all the participants twice during the study. This will be done during first year and later after one year.
次要结局
- Perceptions about the quality of life of PwH(This data will be collected once during the study period. This activity will be done during the second year)