SOCIAL AND FINANCIAL BARRIERS TO OPTIMUM TKI TREATMENT IN PATIENTS WITH CHRONIC MYELOID LEUKEMIA- A KNOWLEDGE-ATTITUDES-PRACTICES STUDY FROM INDIA

Abstract

Introduction: Outcomes in chronic myeloid leukemia (CML) have vastly improved after the introduction of tyrosine kinase inhibitors. However, patients in low and middle income countries face many challenges due to social and financial barriers. Objective: This study was conducted with the aim of understanding socio-economic hindrances and knowledge-attitudes-practices of patients of chronic phase CML who are taking imatinib. Materials and Methods: Patients of chronic phase CML, aged 15 and above, taking imatinib for 6 months or more were included in the study. A questionnaire (in Hindi language) was administered, enquiring about perceptions of nature of disease and its treatment, how imatinib was obtained, drug-taking behaviour, economic and social burden of the treatment. Results: Four hundred patients were recruited (median age 37 years, median duration on imatinib 63 months). Patients hailed from 16 different Indian states and 29.75% patients had to travel more than 500 kilometres for their hospital visit. Scheduled visits were missed by 14.75%. One third of the patients were unaware of the lifelong duration of treatment and 41.75% were unaware of the risks of discontinuing treatment. Treatment was financed by three different means- 61.75% received imatinib free of cost via the Glivec International Patient Assistance Program (GIPAP), 14.25% had treatment costs reimbursed by their employer, and 24% bore the cost of treatment themselves. Patients felt financially burdened due to cost of drugs (self-paying patients), cost of investigations, expenditure of the commute and stay for hospital visit, and loss of working days due to hospital visits. Conclusion: Cost of treatment, lack of widespread availability of hematology services and poor patient awareness are significant barriers to optimum treatment of CML in low and middle income countries.