Can the availability of unrestricted financial support improve the quality of care of thalassemics in a center with limited resources? A single center study from India

Abstract

Comprehensive management of thalassemia demands a multidisciplinary approach, sufficient financial resources, carefully developed expertise of the care givers, as well as significant compliance on the patients’ part. Studies exploring the utility of unrestricted financing within the existing infrastructure, for the management of thalassemia, particularly in the context of a developing country, are scarce. This study aimed to assess the impact of sponsored comprehensive care compared to the routine care of thalassemics provided at Institute of Haematology and Transfusion Medicine, Kolkata, India. Two hundred and twenty patients were selected for the study and distributed in two arms. Regular monthly follow up was done including a Health Related Quality of Life (HRQoL) assessment with SF 36 v2 (validated Bengali version). Patients receiving sponsored comprehensive care showed a significant improvement in the mean hemoglobin levels and decrease in mean ferritin. HRQoL assessment revealed a better score in the physical domain though the mental health domain score was not significantly better at nine months. Unrestricted financial support in the form of comprehensive care has a positive impact on the thalassemia patients in a developing country not only in terms of clinical parameters but also in health related quality of life. 地中海贫血症的综合管理需要多学科的研究方法、充足的财政资源，护理人员应具备丰富的专业知识，并且患者应尽可能服从安排。探讨现有基础设施内无限制财政支持的实用性和地中海贫血症管理（尤其是在发展中国家）的研究甚少。 此研究旨在评估与印度加尔各答血液及输血医学会提供的地中海贫血症常规护理相比，综合护理对患者的影响 。 此研究筛选了 220名患者，并分为两组进行研究。每月定期跟进两组患者情况，包括使用第2版SF 36（经验证的孟加拉语版本）进行的健康生存质量评估（HRQoL）。 接受综合护理的患者，平均血红蛋白水平明显提高，而平均铁蛋白有所降低。尽管九个月后患者心理健康恢复程度不高，但HRQoL评估表明患者在生理方面情况较好。 研究表明，以综合护理形式提供的无限制财政支持无论是在临床参数还是健康生存质量方面都对发展中国家地中海贫血患者有着积极的影响。

Keywords

• thalassemia, financial, chelation, quality of life, SF 36 v2.