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

Objective Evidence 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. Methods To 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. Results The 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. Conclusion The 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.