Conceptualization and Development of Quality of Life Scale for PWH Living in India

There is significant prevalence of haemophilia in India, with second largest number of persons with haemophilia A. Research in India includes diagnostic studies, complications and co-morbidities, prenatal diagnosis, inhibitor development, gene therapy, etc. Limited information about quality of life is available of these patients. A rare genetic condition such as haemophilia can degrade the quality of life of affected persons and their families to a great extent.The objective of the current study is to develop a scale based on variables which will best explain the quality of life of the young and adolescent patients with haemophilia in India. About 200 respondents in the age group of 15 to 40 years were interviewed and data was collected on a 5 point Likert scale. Exploratory factor analysis (EFA) followed by confirmatory factor analysis (CFA) were applied to reduce and refine the scale. With the help of EFA and CFA, we zeroed down to three dimensions for assessing the quality of life of persons suffering from haemophilia in India. The respondents in our study were extremely affected by their self esteem, their disease management ability and their family. This is a first such scale which will aid researchers and policy makers clearly identify the areas of concern to improve the lives of affected patients, specifically to Indian environment.