Bates Maya Jane, Muula Adamson, Gordon Stephen B, Henrion Marc Y R, Tomeny Ewan, MacPherson Peter, Squire Bertel, Niessen Louis
University of Malawi College of Medicine, P/Bag 360, Blantyre 3, Malawi.
Liverpool School of Tropical Medicine, Pembroke Place, Liverpool, L3 5QA, UK.
Wellcome Open Res. 2020 Mar 2;5:2. doi: 10.12688/wellcomeopenres.15633.2. eCollection 2020.
: Many households in low-and-middle income countries face the additional burden of crippling out-of-pocket expenditure when faced with a diagnosis of life-limiting illness. Available evidence suggests that receipt of palliative care supports cost-savings for cancer-affected households. This study will explore the relationship between receipt of palliative care, total household out-of-pocket expenditure on health and wellbeing following a first-time diagnosis of advanced cancer at Queen Elizabeth Central Hospital in Blantyre, Malawi. : Patients and their primary family caregivers will be recruited at the time of cancer diagnosis. Data on healthcare utilisation, related costs, coping strategies and wellbeing will be gathered using new and existing questionnaires (the Patient-and-Carer Cancer Cost Survey, EQ-5D-3L and the Integrated Palliative Care Outcome Score). Surveys will be repeated at one, three and six months after diagnosis. In the event of the patient's death, a brief five-item questionnaire on funeral costs will be administered to caregivers not less than two weeks following the date of death. Descriptive and Poisson regression analyses will assess the relationship between exposure to palliative care and total household expenditure from baseline to six months. A sample size of 138 households has been calculated in order to detect a medium effect (as determined by Cohen's f =0.15) of receipt of palliative care in a regression model for change in total household out-of-pocket expenditure as a proportion of annual household income. : The study has received ethical approval. Results will be reported using STROBE guidelines and disseminated through scientific meetings, open access publications and a national stakeholder meeting. : This study will provide data on expenditure for healthcare by households affected by advanced cancer in Malawi. We also explore whether receipt of palliative care is associated with a reduction in out-of-pocket expenditure at household level.
在低收入和中等收入国家，许多家庭在面对危及生命疾病的诊断时，还要承受高额自费支出带来的额外负担。现有证据表明，接受姑息治疗有助于癌症患者家庭节省开支。本研究将探讨在马拉维布兰太尔的伊丽莎白女王中央医院首次诊断为晚期癌症后，接受姑息治疗、家庭自费医疗总支出与健康和幸福之间的关系。：患者及其主要家庭照顾者将在癌症诊断时招募。将使用新的和现有的问卷（患者及照顾者癌症成本调查问卷、EQ-5D-3L和综合姑息治疗结果评分）收集医疗保健利用、相关成本、应对策略和幸福感的数据。调查将在诊断后的1个月、3个月和6个月重复进行。如果患者死亡，将在死亡日期后至少两周向照顾者发放一份关于丧葬费用的简短五项问卷。描述性分析和泊松回归分析将评估从基线到6个月期间接受姑息治疗与家庭总支出之间的关系。为了在家庭自费总支出占家庭年收入比例变化的回归模型中检测接受姑息治疗的中等效应（由科恩f=0.15确定），计算了138户家庭的样本量。：该研究已获得伦理批准。结果将按照加强流行病学观察性研究报告规范（STROBE）指南进行报告，并通过科学会议、开放获取出版物和全国利益相关者会议进行传播。：本研究将提供马拉维晚期癌症患者家庭的医疗保健支出数据。我们还将探讨接受姑息治疗是否与家庭层面自费支出的减少有关。
