Palliative care within universal health coverage: the Malawi Patient-and-Carer Cancer Cost Survey

• Published in: BMJ supportive & palliative care Vol. 14; no. e1; pp. e353 - e356
• Main Authors: Bates, Maya Jane, Namisango, Eve, Tomeny, Ewan, Muula, Adamson, Squire, S Bertel, Niessen, Louis
• Format: Journal Article
• Language: English
• Published: England British Medical Journal Publishing Group 01.05.2024; BMJ Publishing Group LTD
• Subjects: Adaptation; Cancer; Caregivers; Chronic illnesses; cost and cost analysis; Costs; developing country; Emergency medical care; Expenditures; family caregivers; Health services; Hospitals; Households; Literature reviews; neoplasms; Oncology; Palliative care; Patients; Qualitative research; Questionnaires; Short report; Malawi; China; India; cost and cost analysis; family caregivers; developing country; neoplasms; palliative care
• ISSN: 2045-435X; 2045-4368; 2045-4368
• DOI: 10.1136/bmjspcare-2019-001945

ObjectiveEvidence of the role of palliative care to reduce financial hardship and to support wellbeing in low/middle-income countries (LMIC) is growing, though standardised tools to capture relevant economic data are limited. We describe the development of the Patient-and-Carer Cancer Cost Survey (PaCCCt survey) which can be used to gather data on healthcare use and out-of-pocket expenditure (OOPE) in households affected by cancer in LMIC.MethodsTo identify relevant content qualitative data were gathered using Photovoice to detail concepts of wellbeing and cost areas of importance in households receiving palliative care in Blantyre, Malawi. Existing approaches and tools used to capture OOPE were mapped through a review of the literature. The WHO tuberculosis patient cost survey was chosen for adaptation. Face and content validity of a zero-draft of the PaCCCt survey were developed through review by healthcare professionals and a national stakeholder group. The final survey was translated into local language (Chichewa) and piloted.ResultsThe PaCCCt survey is a tablet-based, third-party administered survey recording healthcare service utilisation and related direct and indirect costs. Coping strategies (loans and dissaving and so on), funeral costs and wellbeing at household level are included. Completion time is <30 min.ConclusionThe PaCCCt survey can be used as part of economic evaluations in populations in need of palliative care in LMIC. Such evidence can support calls for the inclusion of palliative care within Universal Health Coverage which requires end-user protection from financial hardship.