Investigating Challenges Facing the Improvement of Health Related Quality of Life in Iranian β-Thalassemia Major Patients: A Qualitative Study

Background: The complexity of thalassemia and its treatment process has a significant impact on the quality of life of thalassemia major patients. The aim of this study was to investigate the challenges of improving health-related quality of life in β-thalassemia major patients. Methods: A qualitative content analysis was performed at the thalassemia center in Mashhad, Iran. Semi-structured interviews were performed from January ۲۰۱۹ to May ۲۰۲۰, ۲۵ interviews were performed with ۲۳ participants (۱۵ patients aged ≥۱۸ years, ۳ family members and ۵ caregivers) who were selected by purposeful sampling. Results: After analyzing the data, the challenges of improving health-related quality of life in β-thalassemia major patients were categorized into five major themes, including I. living activity, II. opportunity and motivation, III. adaptation, IV. received healthcare, V. psychological and social support. Conclusions: Age increase among thalassemia patients is associated with increased physical, psychological and social complications and treatment costs that lead to a reduced HRQOL. By increasing age, it is necessary to arrange some programs for their presence in the community and to take particular measures for employment, education and marriage of thalassemia major patients. As life span increases, the treatment of these patients reaches the cost-effectiveness threshold, so policy-making is critical for screening the complications of the disease. Along with providing a perfect treatment environment, the accessibility of appropriate laboratory and equipment for measuring iron deposition should be the priorities for health care system of countries, so that thalassemia patients may experience fewer complications and higher HRQOL in their life.

Keywords:

Barriers , β-thalassemia major , Caregiver , Health related quality of life , HRQOL , Qualitative research