Gupta Naveen, Mahapatra Manoranjan, Seth Tulika, Tyagi Seema, Sazawal Sudha, Saxena Renu
Department of Medical Oncology, Mahatma Gandhi Medical College and Hospital, Jaipur, India.
Department of Hematology, All India Institute of Medical Sciences, New Delhi, India.
Mediterr J Hematol Infect Dis. 2021 Jan 1;13(1):e2021004. doi: 10.4084/MJHID.2021.004. eCollection 2021.
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.
This study was conducted to understand socio-economic hindrances, knowledge-attitudes-practices, and assessing nonadherence to treatment in chronic phase CML patients taking imatinib.
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).
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).
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.
引入酪氨酸激酶抑制剂后，慢性髓性白血病（CML）的治疗效果有了显著改善。然而，低收入和中等收入国家（LMICs）的患者由于社会和经济障碍面临诸多挑战。
本研究旨在了解慢性期CML患者服用伊马替尼时的社会经济障碍、知识-态度-行为，并评估治疗依从性。
研究纳入年龄在15岁及以上、服用伊马替尼6个月或更长时间的慢性期CML患者。采用一份问卷（印地语）进行调查，询问疾病及其治疗的性质、伊马替尼的获取方式、服药行为以及治疗的经济和社会负担。通过询问患者自上次医院就诊以来的漏服剂量以及整个治疗过程中是否有任何持续≥7天的治疗中断（TI）来评估治疗依从性。
共纳入400例患者（中位年龄37岁，伊马替尼中位服用时间63个月）。患者来自印度16个不同邦，29.75%的患者前往医院就诊的路程超过500公里。14.75%的患者未按计划就诊。三分之一的患者不知道治疗需持续终身，41.75%的患者不知道停药的风险。治疗费用通过三种不同方式支付——61.75%的患者通过格列卫国际患者援助计划（GIPAP）获得伊马替尼，14.25%通过费用报销计划，24%为自费。52.75%的患者因药品费用（自费患者）、检查费用、往返医院的交通和住宿费用以及因就诊导致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有漏服剂量，9%的患者报告漏服剂量>10%。16.5%的患者报告有治疗中断。自费患者的治疗依从性>10%和治疗中断情况显著更高（分别为15.6%和25%）。
我们观察到患者对疾病的认知欠佳。患者因治疗感到不便且经济负担沉重。治疗依从性差和治疗中断的发生率分别为41.25%和16.5%。这些问题在自费患者中尤为普遍。
