INTRODUCTION Outcomes in chronic myeloid leukemia (CML) have vastly improved after introducing tyrosine kinase inhibitors. However, patients in low and middle-income countries (LMICs) face many challenges due to social and financial barriers. OBJECTIVE This study was conducted to understand socio-economic hindrances, knowledge-attitudes-practices, and assessing nonadherence to treatment in chronic phase CML patients taking imatinib. MATERIALS AND METHODS Patients of chronic phase CML, aged 15 and above, taking imatinib for six months or more were included in the study. A questionnaire (in the Hindi language) was administered, inquiring about the nature of the disease and its treatment, how imatinib was obtained, drug-taking behavior, and the treatment's economic and social burden. Nonadherence was assessed by enquiring patients for missed doses since the last hospital visit and for any treatment interruptions of ≥7 days during the entire course of treatment (TIs). RESULTS Four hundred patients were enrolled (median age 37 years, median duration on imatinib 63 months). Patients hailed from 16 different Indian states, and 29.75% had to travel more than 500 kilometers for their hospital visit. Scheduled hospital visits were missed by 14.75%. A third of the patients were unaware of the lifelong treatment duration, and 41.75% were unaware of the risks of discontinuing treatment. Treatment was financed by three different means -61.75% received imatinib via the Glivec International Patient Assistance Program (GIPAP), 14.25% through a cost-reimbursement program, and 24% self-paying. 52.75% of patients felt financially burdened due to the cost of drugs (self-paying patients), cost of investigations, the expenditure of the commute and stay for the hospital visit, and loss of working days due to hospital visits. 41.25% of patients reported missed doses in the last three months, and 9% reported missing >10% doses. 16.5% of patients reported TIs. Nonadherence>10% and TIs were significantly higher in self-paying patients (15.6% and 25% respectively). CONCLUSION We observed that patient awareness about the disease was suboptimal. Patients felt inconvenienced and financially burdened by the treatment. Nonadherence and treatment interruptions were observed in 41.25% and 16.5%, respectively. These issues were prevalent in self-paying patients.

中文翻译：

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慢性粒细胞白血病患者最佳 TKI 治疗的社会和经济障碍——印度的知识-态度-实践研究。

引言 引入酪氨酸激酶抑制剂后，慢性粒细胞白血病 (CML) 的预后有了很大改善。然而，由于社会和经济障碍，低收入和中等收入国家 (LMIC) 的患者面临许多挑战。目的 本研究旨在了解社会经济障碍、知识-态度-实践以及评估服用伊马替尼的慢性期 CML 患者对治疗的不依从性。材料与方法 15岁及以上、服用伊马替尼6个月或以上的慢性期CML患者被纳入研究。进行了一份问卷（印地语），询问疾病的性质及其治疗、伊马替尼是如何获得的、吸毒行为以及治疗的经济和社会负担。通过询问患者自上次住院以来错过的剂量以及在整个治疗过程 (TI) 期间任何 ≥ 7 天的治疗中断来评估不依从性。结果 招募了 400 名患者（中位年龄 37 岁，伊马替尼的中位持续时间为 63 个月）。患者来自印度 16 个不同的州，其中 29.75% 的患者必须旅行 500 多公里才能到医院就诊。14.75% 的人错过了预定的医院就诊。三分之一的患者不知道终生治疗时间，41.75%的患者不知道停止治疗的风险。治疗由三种不同的方式资助 -61.75% 通过格列卫国际患者援助计划 (GIPAP) 接受伊马替尼，14.25% 通过费用报销计划接受伊马替尼，24% 自付费用。52. 75% 的患者因药物费用（自费患者）、检查费用、就诊的通勤和住院费用以及因就诊造成的工作日损失而感到经济负担。41.25% 的患者报告在过去三个月内错过了剂量，9% 的患者报告错过了 >10% 的剂量。16.5% 的患者报告了 TI。自费患者的不依从性>10% 和 TI 显着更高（分别为 15.6% 和 25%）。结论 我们观察到患者对该疾病的认识并不理想。患者因治疗而感到不便和经济负担。不依从和治疗中断的比例分别为 41.25% 和 16.5%。这些问题在自费患者中普遍存在。就诊的通勤和住宿费用，以及因就诊而造成的工作日损失。41.25% 的患者报告在过去三个月内错过了剂量，9% 的患者报告错过了 >10% 的剂量。16.5% 的患者报告了 TI。自费患者的不依从性>10% 和 TI 显着更高（分别为 15.6% 和 25%）。结论 我们观察到患者对该疾病的认识并不理想。患者因治疗而感到不便和经济负担。不依从和治疗中断的比例分别为 41.25% 和 16.5%。这些问题在自费患者中普遍存在。就诊的通勤和住宿费用，以及因就诊而造成的工作日损失。41.25% 的患者报告在过去三个月内错过了剂量，9% 的患者报告错过了 >10% 的剂量。16.5% 的患者报告了 TI。自费患者的不依从性>10% 和 TI 显着更高（分别为 15.6% 和 25%）。结论 我们观察到患者对该疾病的认识并不理想。患者因治疗而感到不便和经济负担。不依从和治疗中断的比例分别为 41.25% 和 16.5%。这些问题在自费患者中普遍存在。5% 的患者报告了 TI。自费患者的不依从性>10% 和 TI 显着更高（分别为 15.6% 和 25%）。结论 我们观察到患者对该疾病的认识并不理想。患者因治疗而感到不便和经济负担。不依从和治疗中断的比例分别为 41.25% 和 16.5%。这些问题在自费患者中普遍存在。5% 的患者报告了 TI。自费患者的不依从性>10% 和 TI 显着更高（分别为 15.6% 和 25%）。结论 我们观察到患者对该疾病的认识并不理想。患者因治疗而感到不便和经济负担。不依从和治疗中断的比例分别为 41.25% 和 16.5%。这些问题在自费患者中普遍存在。