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

Abstract

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.

Impact, challenges and limits of inpatient palliative care consultations – perspectives of requesting and conducting physicians

“…However, PC in general is mostly accessible in highincome countries [27,28], an issue addressed by the WHO, but still not covered satisfactory [29].…”

Data and information needs of policymakers for palliative cancer care: a multi-country qualitative study

“…These data are critical to decision making and planning. For example, to advance regional advocacy for Universal Health Care Coverage, service delivery and the costing of data are needed yet this remains a big gap in the sector [ 39 ]. Regarding the mapping of service delivery points as well as undertaking human resource inventories, the region should prioritise these as services are localised and identifying appropriate care centres would reduce the delays in enrolment into care and hence optimise outcomes [ 40 ].…”

Crucial areas of the economic analysis of public cancer care

“…Среди распространенных методов анализа следует отметить информационно-аналитическую обработку медицинских записей [35][36][37]. Наиболее современными подходами к оценке затрат на паллиативную помощь являются анализы, выполненные на основе сбора данных с помощью активного дистанционного «фотоинтервью» (Великобритания, Уганда, Малави) [38], изучение эффективности паллиативной помощи по показателям качества жизни (Турция) [39], ретроспективный, компьютеризированный популяционный анализ историй болезни и электронных баз регистрационных записей затрат (Бразилия) [40]. В подобных исследованиях систематизации информации о пациентах и выделению значимой информации могут способствовать медицинские регистры [41][42][43].…”