More than "financial toxicity": the Socioeconomic Impact of Cancer and Cancer Care on Patients and Their Relatives
Author(s)
Michael Schlander, MBA, PhD, MD1, Valesca P. Retel, MSc, PhD2, Wim van Harten, MD, PhD2;
1German Cancer Research Center (DKFZ), Head of Division, Heidelberg, Germany, 2Netherlands Cancer Institute (NKI), Amsterdam, Netherlands
1German Cancer Research Center (DKFZ), Head of Division, Heidelberg, Germany, 2Netherlands Cancer Institute (NKI), Amsterdam, Netherlands
OBJECTIVES: Even in high income countries with comprehensive health care systems, serious disease can result in financial hardship for patients and their households. The issue extends beyond “financial toxicity” (loss of income, out-of-pocket expenditures for direct medical and nonmedical care, and their direct consequences), extending beyond the patients themselves to their relatives, including caregivers and dependents. There is an international need for a coherent theoretical framework, more consistent use of terminology, and validated measurement instruments.
METHODS: We initiated a Task Force (TF) under the umbrella of the Organisation of European Cancer Institutes (OECI), which was comprised of 25 members (health economists, clinicians, psychologists, patients, representing 26 unique institutional departments mainly from Europe) who met 11 times over the course of two years. Work spanned dedicated literature reviews, iterative meetings on foundational principles (notably links to [health] economic costing theory and patient-reported outcomes research), conceptualization including a best-fit framework synthesis subproject, Delphi exercises and several steps of internal and external validation.
RESULTS: The TF produced 25 recommendations, including a scientifically neutral definition of “socioeconomic impact” from the perspective of patients and their relatives, a comprehensive conceptual framework, and a consistent taxonomy linked to the framework. The TF consensus highlights directions for future research with a view towards policy relevance. Beyond descriptive studies into the dimension of the problem, individual severity and predictors of vulnerability should be explored. Future research should focus on the valid measurement of the various dimensions of socioeconomic outcomes and their distribution among vulnerable patient groups.
CONCLUSIONS: The OECI Task Force consensus recommendations will facilitate and enhance future research efforts, on the national and international levels, into the socioeconomic impact of cancer and cancer care. They will provide a crucial reference point for the development and validation of specific patient-reported outcome instruments designed to measure its broader effects.
METHODS: We initiated a Task Force (TF) under the umbrella of the Organisation of European Cancer Institutes (OECI), which was comprised of 25 members (health economists, clinicians, psychologists, patients, representing 26 unique institutional departments mainly from Europe) who met 11 times over the course of two years. Work spanned dedicated literature reviews, iterative meetings on foundational principles (notably links to [health] economic costing theory and patient-reported outcomes research), conceptualization including a best-fit framework synthesis subproject, Delphi exercises and several steps of internal and external validation.
RESULTS: The TF produced 25 recommendations, including a scientifically neutral definition of “socioeconomic impact” from the perspective of patients and their relatives, a comprehensive conceptual framework, and a consistent taxonomy linked to the framework. The TF consensus highlights directions for future research with a view towards policy relevance. Beyond descriptive studies into the dimension of the problem, individual severity and predictors of vulnerability should be explored. Future research should focus on the valid measurement of the various dimensions of socioeconomic outcomes and their distribution among vulnerable patient groups.
CONCLUSIONS: The OECI Task Force consensus recommendations will facilitate and enhance future research efforts, on the national and international levels, into the socioeconomic impact of cancer and cancer care. They will provide a crucial reference point for the development and validation of specific patient-reported outcome instruments designed to measure its broader effects.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
PCR34
Topic
Patient-Centered Research
Disease
SDC: Oncology