Forschung

Ein Großteil der Forschung in diesem Bereich wurde im Rahmen einer OECI Task Force zu den sozioökonomischen Auswirkungen von Krebs durchgeführt, die Michael Schlander im März 2021 ins Leben gerufen hat. [Die nachstehenden Inhalte stehen ausschliesslich in englischer Sprache zur Verfügung.]

Die OECI (Organisation Europäischer Krebsinstitutionen) ist das wichtigste europäische Netzwerk akkreditierter Krebszentren mit mehr als 100 Mitgliedern; die wissenschaftliche Arbeit der Task Force befasst sich mit der sozioökonomischen Belastung durch schwere Erkrankungen, insbesondere Krebs, aus Perspektive von Patienten und deren Haushalte.

Health economists approach cost analyses from multiple perspectives, including the societal and payer viewpoints, and occasionally of employers, citizens, and patients. However, in applied health economics, the patient’s perspective has often been underexplored or treated as an afterthought. In the United States, the concept of “financial toxicity” related to cancer treatment has gained significant attention in recent years, highlighting the economic strain faced by many patients. Conversely, there is a common perception that European welfare systems, with their universal healthcare coverage, shield cancer patients for financial hardship.

Despite these assumptions, many cancer patients in European countries still experience significant financial strain. Their objective financial burden arises from direct medical and non-medical costs (including co-payments) and indirect costs, such as lost income, which is not always fully compensated through social welfare benefits. Beyond these measurable financial burdens, patients and their families often face intangible costs, including psychological distress, reduced quality of life, and even worsened clinical outcomes, such as higher mortality rates.

Because these consequences extend beyond the scope of “financial toxicity,” we propose adopting the broader, more neutral term socioeconomic impact. This term more comprehensively captures the financial, psychological, and social consequences of cancer on patients, survivors and their families, including caregivers and dependents. Addressing these multifaceted impacts is critical for understanding the full burden of cancer and for developing policies and interventions that support patients and their families.

Research on the socioeconomic impact of cancer and cancer care from the perspective of cancer patients and their relatives in Europe remains in its early stages. The field is marked by significant heterogeneity in methods, terminology, and a lack of a unified theoretical foundation. To address these challenges, an international Task Force was established in March 2021 within the framework of the OECI Health Economics Working Group, under the leadership of Michael Schlander (chair) and Wim van Harten (co-chair).

The primary goal of the Task Force was to develop a European consensus on a comprehensive conceptual framework, a consistent taxonomy, and standardized definitions for analyzing the socioeconomic impact of cancer from the patient and family perspective. This initiative seeks to minimize redundant, overlapping, and non-comparable research, while fostering more coordinated, rigorous, and policy-relevant research efforts across Europe.

Since its inception, the Task Force has engaged in extensive consensus-building activities, including iterative focus group discussions, Delphi exercises, and consultations with patient representatives and external experts. This process culminated in 25 consensus recommendations, published in ´The Lancet Oncology´ in April 2024. These recommendations provide a comprehensive definition of socioeconomic impact, a detailed conceptual framework outlining cause, intermediate consequences, and outcomes, and guidance for the development and validation of patient-reported outcome instruments tailored to capture the broader socioeconomic effects of cancer on patients and their families.

Parallel to the conceptual work, additional empirical studies into the socioeconomic impact of cancer have been conducted. Beyond research related to the COVID-19 pandemic, one study used data from the Socio-Economic Panel (SOEP), one of Germany’s largest and most comprehensive household surveys. The findings revealed that average job incomes declined by 26% to 28% within the first year following a cancer diagnosis.

In another project, conducted in collaboration with the DKFZ Unit of Cancer Survivorship (led by Volker Arndt), we analyzed data from the CAESAR study. This research focused on assessing out-of-pocket expenses and income losses among breast cancer survivors in Germany, identifying key factors contributing to their financial burden.

Selected Publications

For a recent overview of the Task Force activities and results achieved to date, you may refer to Michael Schlander’s presentation delivered at the OECI Oncology Days in Athens, Greece, in June 2025:

Schlander M.; on behalf of the OECI Task Force on Socioeconomic Impact Research:
Socioeconomic Impact Analysis: «Towards A More Comprehensive Patient Perspective» | Linking Research & Policy.
OECI 2025 Oncology Days Athens / Greece, June 11 – 13, 2025.

Further References

1. Pham P.D., et al.: Measuring the Socioeconomic Impact of Cancer: A Systematic Review and Standardized Assessment of Patient Reported Outcomes (PRO) Instruments. PharmaEcon Open. 2025; 9(4): 519-539
2. Pham P.D., et al.: The Socioeconomic Impact of Cancer and Cancer Care on Patients and Their Relatives: Assessing the Content Validity of Dedicated Patient-Reported Outcomes Measurement (PROM) Instruments. Value Health. 2025; PCR 85
3. Schlander M., et al.; on behalf of the OECI Task Force on the ´Socieconomic Impact of Cancer´: More than “Financial Toxicity”: The Socioeconomic Impact of Cancer and Cancer Care on Patients and Their Relatives. Value Health. 2025; PCR 34
4. Vancoppenolle J., et al.; on behalf of the OECI Working Group Health Economics: Financial toxicity and socioeconomic impact of cancer in Europe. ESMO Open. 2025; 10(6): 105293
5. Schlander M., et al.: The socioeconomic impact of cancer on patients and their relatives: Organisation of European Cancer Institutes task force consensus recommendations on conceptual framework, taxonomy, and research directions. The Lancet Oncology. 2024: 25(4): e152–e163
6. Pham, P.D., et al.: Measuring the socioeconomic impact of cancer: A systematic review and standardized assessment of patient-reported outcome (PRO) instruments. Value Health. 2023; 26(S12): S495
7. Pham P.D., Schlander M., et al.: Developing a conceptual framework for socioeconomic impact research in European cancer patients: A 'best-fit' framework synthesis. The Patient. 2023; 16(5): 515-536
8. Arndt V., Hernandez D., Schlander M.: Einkommenseinbußen nach Krebs – Ergebnisse aus Deutschland. Onkologie. 2022; 28: 951-956
9. Eckford, R., et al.: A systematic review of the socioeconomic impact of cancer on patients and families: Are differences among countries being effectively captured and addressed?. Value Health. 2020; 23(Suppl. 2): S478
10. Hernandez D., Schlander M.: Income loss after a cancer diagnosis in Germany: An analysis based upon the socio-economic panel survey. Cancer Medicine. 2021; 10(11): 3726-3740
11. Schlander M.: PRO (“patient-reported outcomes”) und Lebensqualität in der Onkologie. FORUM. 2020; 35: 382-390
12. Schneider J., et al.: Out-of-pocket payments and loss of income among long-term breast cancer survivors in Germany: A multi-regional population-based study. Journal of Cancer Survivorship. 2022: 1-21