BACKGROUND: Research into the socioeconomic impact of cancer and cancer care from the perspective of patients and their relatives (CP&R) has been highly heterogeneous and has been hampered by an absence of standards for measuring their objective financial burden.

OBJECTIVES: Our aim is to contribute to the development of costing principles for effective socioeconomic impact research from the perspective CP&R, linked to established health economic theory.

METHODS: Based upon a scoping review of current recommendations on costing from the perspective of CP&R (search on Medline, Embase, INAHTA and ISPOR pharmacoeconomic guidelines database), a subgroup of the Consensus Task Force on Socioeconomic Impact Analysis of the Organisation of European Cancer Institutes (OECI) identified the need for adaptations to reflect the CP&R perspective in cost measurement.

RESULTS: Valid cost analyses from the perspectives of cancer patients and their relatives should reflect established health economic standards and terminology, including the cost categories proposed by the Washington Panels I (Gold et al., 1996) and II (Neumann et al., 2015). Existing methodological standards need to be adhered to, including but not limited to the process of identification, quantification, and valuation, and the distinction between bottom-up and top-down approaches. The complexity of adopting a CP&R perspective implies the need for a multi-dimensional framework, considering not only cost categories (e.g., direct/indirect, medical/non-medical), but also proximity from disease and interventions (e.g., patient, household, informal household network), and the continuum of care across stages of the disease (e.g., initial diagnosis, treatment planning, treatment, follow-up, disease-free survival, end-of-life). A multidimensional framework will need to further integrate confounders (e.g., sociodemographic characteristics, self-management behaviors, institutional context), in order to support the research goal to identify vulnerable subgroups.

CONCLUSIONS: A We present a consensus proposal for costing standards for socioeconomic impact research from the perspective of CP&R and provide a checklist for future studies.