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FIAT: Financial Effects of a Tumor Disease

This interdisciplinary project aims to develop the first German-language standardised and validated questionnaire to assess patients’ self-reported financial effects of a tumor disease.

Cancer diagnosis and therapy can be associated with physical, emotional and financial burdens in patients. While much attention is being paid to physical and emotional stress, there is almost no data on financial toxicity and its impact on patients in Germany. Financial toxicity is a side effect of cancer that results from the perceived distress an individual may experience due to direct and indirect cancer-related costs, referred to as objective financial burden.

Social services have been recording an increasing need for advice in this area for years. However, the spectrum of objective financial burden and its subjective consequences for the individual affected patients and their relatives are neither defined nor systematically recorded for the German health care context – among others due to the absence of a validated and standardised survey instrument.

With combined expertise from oncology/medical ethics, health economics, and empirical social research methods, this project pursues the following objectives:

Aims of the project:

  • Identification of relevant dimensions and topics for assessing the financial impact of cancer for affected patients
  • Identification of dimensions and topics that are relevant for social services and payers as potential users of the instrument
  • Definition of the construct “financial burdens”
  • Development of a reliable and valid German-language instrument for measuring experienced financial effects of a cancer diagnosis and therapy
  • Piloting of a screening program to identify patients with an exceptionally high risk of financial burdens 
  • Formulation of well-founded recommendations for the use of the instrument in the clinical (e.g. as a screening tool for social services advice) and regulatory context (for payers)

German Cancer Aid

Term: 2020-2023

Oncology/Medical Ethics

Health Economics

Methods in Empirical Social Research

Oncology

Heidelberg University

Medical Faculty

Heidelberg University Hospital

National Center for Tumor Diseases

Prof. Dr. med. Dr. phil. Eva Winkler, Dr. Katja Mehlis

Research Associate:  Dr. phil. Andrea Züger

Bielefeld University 

School of Public Health

Health Economics and Health Care Management 

Prof. Dr. Wolfgang Greiner  

Research Associates: Bastian Surmann, Sophie Pauge

 

 

Dresden University

Institute of Sociology 

Methods in Empirical Social Research

Prof. Dr. Natalja Menold

Research Associate: Luise Richter

Jena University Hospital

 

Prof. Dr. med. Thomas Ernst

Research Associate: Viktoria Mathies

 

  • Pauge S, Richter L, Züger A, Mehlis K, Mathies V, Ernst T, Greiner W, Menold N, Winkler EC (2023) 1872P: Financial distress of a cancer disease in Germany: A new patient reported outcome measure (PROM) and first results from a bi-centered cross-sectional analysis. Annals of Oncology 34:S1007-S1008. doi:10.1016/j.annonc.2023.09.2820 
  • Züger A, Mathies V, Mehlis K, Pauge S, Richter L, Surmann B, Ernst T, Greiner W, Menold, Natalja, Winkler, Eva (2022) Navigating the German Health Care System for Financial Support - Breeding ground for Subjective Distress. A Qualitative Interview-Study with Cancer Patients in Germany. Oncology Research and Treatment 45(Suppl. 3):6–285. doi:10.1159/000521004 
  • Pauge S, Surmann B, Zueger A, Richter L, Mathies V, Mehlis K, Ernst T, Greiner W, Menold N, Winkler E (2022) Financial distress of cancer patients in everyday counselling of social services in Germany. A qualitative focus group study. Oncology Research and Treatment 45(Suppl. 3):139. Doi.org/10.1159/00052100 
  • Pauge S, Surmann B, Zueger A, Richter L, Mathies V, Mehlis K, Ernst T, Greiner W, Menold N, Winkler E (2022) HTA152 Practical Challenges of Implementing a New Patient-Reported Outcome (PRO) in Oncology Under the German Pharmaceutical Market Restructuring Act (AMNOG) - Results From a Qualitative Focus Group Study. Value in Health 25(12):S326. doi:10.1016/j.jval.2022.09.1610 
  • Züger A., Pauge S., Surmann B., Mathies V., Richter L., Mehlis K. Thomas E., Greiner W., Menold N., Winkler E.C. (2022). Finanzielle Auswirkungen einer Krebserkrankung. Entwicklung eines konzeptuellen Modells für den deutschen Versorgungskontext. Erste Ergebnisse. Österreichischen und Schweizerischen Gesellschaften für Hämatologie und Medizinische Onkologie, 7.-10. Oktober 2022, Wien: Abstracts. Oncol Res Treat. 2022;45 Suppl 2:5-346. doi: 10.1159/000526456, 109.
  • Pauge S., Surmann B., Züger A., Richter L., Mathies V., Mehlis K. Thomas E., Greiner W., Menold N., Winkler E.C. (2022). Risikofaktoren von Krebspatienten für finanzielle Belastungen in allgemeinen Krankenversicherungssystemen. Ergebnisse einer systematischen Literaturübersicht Österreichischen und Schweizerischen Gesellschaften für Hämatologie und Medizinische Onkologie, 7.-10. Oktober 2022, Wien: Abstracts. Oncol Res Treat. 2022;45 Suppl 2:5-346. doi: 10.1159/000526456, 2013-2014.
  • Pauge, S., Surmann, B., Züger, A., Mathies, V., Richter, L., Mehlis, K., Ernst, T., Greiner, W., Menold, N., Winkler, E.C. (2022) 1323P Towards the development of a German instrument to measure financial effects of a tumor disease: First results, Annals of Oncology, Volume 33, Supplement 7, 2022. doi.org/10.1016/j.annonc.2022.07. 1456, 1148.
  • Richter, Luise, Pauge, Sophie, Mehlis, Katja, Surmann, Bastian, Züger, Andrea, Mathies, Viktoria, Ernst, Thomas, Greiner, Wolfgang, Menold, Natalja, & Winkler, Eva C. (2022). Financial Effects of a Tumor Disease – Development and Validation of a Patient Reported Outcome Measure in Germany: Study Protocol. Zenodo. ­https://doi.org/10.5281/zenodo.6868183
  • Pauge, S.; Surmann, B.; Mehlis, K.; Zueger, A.; Richter, L.; Menold, N.; Greiner, W.; Winkler, E.C. Patient-Reported Financial Distress in Cancer: A Systematic Review of Risk Factors in Universal Healthcare Systems. Cancers 2021, 13, 5015. https://doi.org/10.3390/cancers13195015


(Relevant preliminary work)

  • Mehlis K, Witte J, Surmann B, Kudlich M, Apostolidis L, Walther J, Jäger D, Greiner W, Winkler EC (2020). The patient-level effect of the cost of Cancer care – financial burden in German Cancer patients, BMC Cancer, 20:529 https://doi.org/10.1186/s12885-020-07028-4
  • Mehlis K, Surmann B, Winkler EC (2020). Finanzielle Auswirkung von Krebserkrankungen und sozialethische Implikationen, Der Onkologe, 26(5), 425-430, https://doi.org/10.1007/s00761-020-00722-9
  • Witte J, Mehlis K, Surmann B, Lingnau R, Damm O, Greiner W, Winkler EC (2019). Methods for measuring financial toxicity after cancer diagnosis and treatment: a systematic review and its implications, Ann Oncol. 2019 May 2. pii: mdz140. https://doi.org/10.1093/annonc/mdz140

2023

  • Pauge S, Richter L, Züger A, Mehlis K, Mathies V, Ernst T, Greiner W, Menold N, Winkler EC (2023) 1872P: Financial distress of a cancer disease in Germany: A new patient reported outcome measure (PROM) and first results from a bi-centered cross-sectional analysis. European Society for Medical Oncology (ESMO) 2023, Madrid.
  • Richter L, Mehlis K, Züger A, Pauge S, Surmann B, Viktoria M, Ernst T, Greiner W, Winkler E: Die finanzielle Belastung von Krebspatient:innen und gesundheitliche Ungleicheit. Erste Ergebnisse einer bizentrischen Studie in Deutschland, Kongress Armut und Gesundheit 2023, Berlin.
  • Pauge S,  Richter L, Surmann B, Züger A, Viktoria M, Mehlis K, Ernst T, Greiner W, Menold N, Winkler E: Die individuelle finanzielle Belastung als klinisch relevanter Endpunkt in der Onkologie: Entwicklungsstand und erste Ergebnisse. Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ) 2023, Hannover.

2022

  • Züger A, Viktoria M, Pauge S, Surmann B, Richter L, Mehlis K, Ernst T, Greiner W, Menold N Winkler E: Navigating the German Health Care System for Financial Support – Breeding ground for Subjective Distress. A Qualitative Interview-Study with Cancer Patients in Germany. Deutscher Krebskongress (DKK) 2022, Berlin.
  • Pauge S, Surmann B, Züger A, Richter L, Viktoria M, Mehlis K, Ernst T, Greiner W, Menold N Winkler E: Financial distress of cancer patients in everyday counselling of social services in Germany. A Qualitative Focus Group Study. Deutscher Krebskongress (DKK) 2022, Berlin.
  • Pauge S, Surmann B, Züger A, Richter L, Viktoria M, Mehlis K, Ernst T, Greiner W, Menold N, Winkler E: Practical Challenges of Implementing a New Patient-Reported Outcome (PRO) in Oncology Under the German Pharmaceutical Market Restructuring Act (AMNOG). Results From a Qualitative Focus Group Study. The International Society for Pharmacoeconomics and Outcomes Research (IPSOR) 2022, Wien.
  • Pauge S, Züger A, Surmann B, Viktoria M, Richter L, Mehlis K, Ernst T, Greiner W, Menold N Winkler E: Financial Effects of a Tumor Disease. Developing a Conceptual Model for the German Health Care Context. First results. Deutsche Gesellschaft für Hämatologie und Onkologie (DGHO) 2022, Wien.
  • Pauge S, Surmann B, Züger A, Viktoria M, Richter L, Mehlis K, Ernst T, Greiner W, Menold N, Winkler E: Towards the Development of a German Instrument to Measure Financial Effects of a Tumor Disease. First results. European Society for Medical Oncology (ESMO) 2022, Paris.
  • Richter L, Menold N, Züger A, Pauge S, Surmann B, Viktoria M, Ernst T, Greiner W, Winkler E: Entwicklung und Validierung eines Fragebogens zur Erfassung finanzieller Folgen einer Krebserkrankung. Eine Mixed-Methods Untersuchung. Jahrestagung der Deutschen Gesellschaft für Soziologie (DGS) 2022, Bielefeld.

2021

  • Züger A, Mehlis K, Winkler Eva: Subjektiv erlebte finanzielle Auswirkungen einer Tumorerkrankung. Eine qualitative Interviewstudie mit KrebspatientInnen. Jahrestagung DGMP/DGMS 2021, virtuell.
  • Züger A: Finanzielle Auswirkungen einer Krebserkrankung: Empirische Daten zu objektiver und subjektiver Belastung. Fortbildungsveranstaltung Veranstaltungsreihe Krebs im Focus des Nationalen Centrums für Tumorerkrankungen Dresden 2021, virtuell.