THE SOCIOECONOMIC CONSEQUENCES OF CANCER FOR PATIENTS - ACTIONS NEEDED AND FEASIBLE
Author(s)
Michael Schlander, MBA, PhD, MD1, Wim van Harten2, Valesca P. Retel, MSc, PhD3, Bernd Crusius, M.Sc.4, Rachel D. Eckford, M.Sc., M.Ed.5, Nora Franzen, Ph.D.6, Iva Kirac, M.D.7, Silva Mitro, M.Sc.8, Camila Quirland-Lazo, MD9.
1Head of Division, German Cancer Research Center (DKFZ), Heidelberg, Germany, 2Amsterdam, Netherlands, 3Netherlands Cancer Institute (NKI-AVL), Amsterdam, Netherlands, 4Haus der Krebs-Selbshilfe, Bonn, Germany, 5German Cancer Research Center, Heidelberg, Germany, 6Netherlands Cancer Institute, Amsterdam, Netherlands, 7Sestre Milosrdnice University, Zagreb, Croatia, 8Istituto Oncologico Veneto, Padova, Italy, 9Universidad de Chile, Santiago, Chile.
1Head of Division, German Cancer Research Center (DKFZ), Heidelberg, Germany, 2Amsterdam, Netherlands, 3Netherlands Cancer Institute (NKI-AVL), Amsterdam, Netherlands, 4Haus der Krebs-Selbshilfe, Bonn, Germany, 5German Cancer Research Center, Heidelberg, Germany, 6Netherlands Cancer Institute, Amsterdam, Netherlands, 7Sestre Milosrdnice University, Zagreb, Croatia, 8Istituto Oncologico Veneto, Padova, Italy, 9Universidad de Chile, Santiago, Chile.
OBJECTIVES: Even in countries providing universal health care, cancer patients and long-term survivors experience burdensome socioeconomic impacts (SEI), many of which are driven by out-of-pocket expenses and lowered earnings due to reduced or lost work capacity. The SEI of cancer is associated with impaired quality of life, poorer clinical outcomes, and increased mortality. In 2021, a multi-stakeholder Task Force (TF) was inaugurated within the framework of the Health Economics Working Group of the Organisation of European Cancer Institutes (OECI), with the objective to produce actionable recommendations for research, clinical practice, and policy to address the SEI of cancer from the perspective of patients and their relatives.
METHODS: Building on its conceptual model of SEI, capturing the multidimensional nature of SEI, and informed by primary research, targeted literature reviews, and extensive deliberation, the TF developed a consensus on actionable steps to address the SEI of cancer, an often overlooked consequence of the disease.
RESULTS: Recommendations span research, clinical practice, and policy. There is a need to better understand determinants of vulnerability to and severity of SEI, to overcome current fragmentation of research into SEI, and to establish systematic recording of SEI, beyond purely health-related patient-reported outcomes. In routine health care, the currently low awareness among providers (including cancer specialists) should be addressed, as well as the disintegration of responsibilities and support systems, and the financial navigation of patients should be improved. Consideration of SEI should be enhanced in decision processes, official guidelines, and Health Technology Assessments, and patients - especially young adults - should be involved in policy making around these issues. A “right to be forgotten” (the right to live without discrimination due to a past cancer diagnosis) should be granted to long-term survivors.
CONCLUSIONS: Immediate action is needed and feasible; it should be accompanied by further research into prevalence, severity, and implementation effectiveness.
METHODS: Building on its conceptual model of SEI, capturing the multidimensional nature of SEI, and informed by primary research, targeted literature reviews, and extensive deliberation, the TF developed a consensus on actionable steps to address the SEI of cancer, an often overlooked consequence of the disease.
RESULTS: Recommendations span research, clinical practice, and policy. There is a need to better understand determinants of vulnerability to and severity of SEI, to overcome current fragmentation of research into SEI, and to establish systematic recording of SEI, beyond purely health-related patient-reported outcomes. In routine health care, the currently low awareness among providers (including cancer specialists) should be addressed, as well as the disintegration of responsibilities and support systems, and the financial navigation of patients should be improved. Consideration of SEI should be enhanced in decision processes, official guidelines, and Health Technology Assessments, and patients - especially young adults - should be involved in policy making around these issues. A “right to be forgotten” (the right to live without discrimination due to a past cancer diagnosis) should be granted to long-term survivors.
CONCLUSIONS: Immediate action is needed and feasible; it should be accompanied by further research into prevalence, severity, and implementation effectiveness.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR184
Topic
Health Service Delivery & Process of Care, Organizational Practices, Patient-Centered Research
Topic Subcategory
Patient Engagement, Patient-reported Outcomes & Quality of Life Outcomes
Disease
Oncology