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Task Force on the Socioeconomic Impact Analysis of Cancer & Cancer Care

Background

It is well established that many patients with a diagnosis of cancer experience financial hardship. While the majority of publications on this subject (often referred to as "financial toxicity" or "financial burden") stem from the U.S., there is increasing recognition that this is a global issue.

Cancer patients in European countries—where some type of healthcare coverage is universal—are no exception to this concern. Their objective financial burden is driven by direct medical and non-medical expenditures (including co-payments, which may be substantial) and by indirect costs (i.e., loss of income). The objective costs to patients contribute to intangible costs (subjective financial burden), reflected in psychological distress, decreased quality of life, and impaired clinical outcomes, including higher mortality.

Both objective and subjective burdens affect cancer patients undergoing treatment, cancer survivors, and the families of patients, including partners, dependents, and caregivers.

The extent of the problem for any given cancer patient is a function of the type of cancer, the stage, duration of their disease, the length of convalescence, and their pre-cancer health-related psychological and socioeconomic status. It is further moderated by individual factors (e.g., personal values and preferences), environmental and social factors (e.g., availability of and access to psychological and economic support), and the characteristics of the healthcare and social security systems (e.g. access and coverage of anti-cancer treatments and medicaments, extent of income compensation schemes).

Meaningful socioeconomic impact analyses, designed to capture the full range of effects of cancer and cancer care, need to include the perspective of patients and their families. Traditional measures of patient-reported outcomes (PROs), notably including the commonly used instruments to assess the health-related quality of life (HRQoL) of cancer patients, fall short of adequately capturing the financial and broader socioeconomic consequences of cancer and cancer care.

Moreover, varying terminology used to describe the objective and subjective impact further complicates the issue. This hinders interpretation and comparability of the increasing number of studies on the financial burden experienced by cancer patients in Europe. The inconsistent use of terminology in existing studies can be traced back to the absence of a coherent and comprehensive conceptual framework for socioeconomic impact analyses.

In order to address the need for a conceptual framework, consistent taxonomy, and validated measurement instruments, Michael Schlander, Head of the DKFZ Division of Health Economics, initiated a European Task Force on the Socioeconomic Impact Analysis of Cancer & Cancer Care under the auspices of the OECI Working Group on Health Economics led by Wim van Harten of the Netherlands Cancer Institute (NKI).

Task Force Objectives

  • To develop a European consensus on the socioeconomic impact of cancer (from the perspective of patients and their relatives), including:
    • a comprehensive conceptual framework
    • a consistent taxonomy and terminology
    • instrument development and validation

Rationale

It is expected that the Task Force recommendations will help:

  • to reduce or eliminate the risk of wasted lost research efforts due to redundant, overlapping, and incomparable work due to unnecessarily heterogeneous use of terms and definitions
  • support and facilitate further research in the field, including a potential platform for future collaborative projects by members of the Task Force

Task Force Membership

If you're interested in the work of the Task Force, please feel free to contact the Task Force leaders or any member.

Task Force Lead:

Michael Schlander
Head of the Division of Health Economics, German Cancer Research Center (DKFZ), Heidelberg, Germany
Mannheim Medical Faculty, University of Heidelberg, Heidelberg, Germany
Alfred Weber Institute (AWI), University of Heidelberg, Heidelberg, Germany
Email: m.schlander@dkfz-heidelberg.de

Task Force Co-lead:

Wim H. van Harten
CEO, Rijnstate Hospital, Arnhem, Netherlands.
Chair, Quality Management and HealthCare Technology, University of Twente, Enschede, Netherlands
Research Group Leader, the Netherlands Cancer Institute, Amsterdam, Netherlands
Chair, Working Group Health Economics OECI, Brussels, Belgium
Email: WvanHarten@Rijnstate.nl

Task Force Members:

Rachel Eckford
German Cancer Research Center (DKFZ), Heidelberg, Germany
Email: r.eckford@dkfz-heidelberg.de

Agustín Escobedo
Catalan Institute of Oncology (ICO), Barcelona, Spain
Email: aescobedo@iconcologia.net

Jeanette Fuentes Cid
Arturo López Pérez Foundation, Santiago, Chile
Email: jeanette.fuentes@falp.org

Diego Hernandez
German Cancer Research Center (DKFZ), Heidelberg, Germany
Email: d.hernandez@dkfz.de

Karla Hernandez-Villafuerte
German Cancer Research Center (DKFZ), Heidelberg, Germany
Email: k.hernandezvillafuerte@dkfz.de

Iva Kirac
Department of Surgical Oncology, University Hospital for Tumors, Sestre milosrdnice University Hospital Center, Zagreb, Croatia
Email: iva.kirac@kbcsm.hr

Felipe Maza Fajardo
Arturo López Pérez Foundation, Santiago, Chile
Email: felipe.maza@falp.org

Phu Duy Pham
German Cancer Research Center (DKFZ), Heidelberg, Germany
Email: phuduy.pham@dkfz.de

Camila Quirland Lazo
Arturo López Pérez Foundation, Santiago, Chile
Email: camila.quirland@falp.org

Valesca Retel
Netherlands Cancer Institute, Amsterdam, The Netherlands
Email: v.retel@nki.nl

Olaya Seoane
Catalan Institute of Oncology (ICO), Barcelona, Spain
Email: olayaseoane@iconcologia.net

Sigbjørn Smeland
University of Oslo (UiO), Institute of Clinical Medicine, Division of Cancer Medicine (KRE), Oslo, Norway
Email: SSM@ous-hf.no

Richard Sullivan
Institute of Cancer Policy, Global Oncology Group, King's College London, UK
Email: Richard.sullivan@kcl.ac.uk

Jasper Ubels
German Cancer Research Center (DKFZ), Heidelberg, Germany
Email: j.ubels@dkfz-heidelberg.de

Julie Vancoppenolle
Netherlands Cancer Institute, Amsterdam, The Netherlands
Email: j.vancoppenolle@nki.nl

Thomas Vermeulin
Centre Henri Becquerel, Rouen Cédex, France
Email: thomas.vermeulin@chb.unicancer.fr

Link to SharePoint

Accessible to task force members only:

https://webcoop.inet.dkfz-heidelberg.de/sites/SIACT

 

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