Financial Toxicity

The financial impact of cancer on the individual patient is often characterised as an objective and a subjective financial burden. The objective financial burden gives no information on how the patient perceives the financial impact and the consequences on their life.  This view is provided by the subjective financial burden, which describes the impact and consequences of the objective costs on the patient. This often results in material consequences, psychological effects, or behavioural changes, which then are expressed as a “financial toxicity”. The currently existing tools are either only narrowly validated, are generic economic tools, are restricted to a certain health care system, are restricted to a specific cancer site, or do not cover all relevant domains of financial toxicity.

The aim of this Phase 1 study is to develop a list of issues related to financial toxicity in cancer patients.

The EORTC Quality of Life Group Module Development Guidelines for Phase 1 development of a QLG module will be followed, with the addition of extra qualitative interviews with patients in countries where very little information has been published on financial toxicities in cancer patients (what we are calling Phase 1a). The countries selected for Phase 1a qualitative interviews will be determined by the literature review results. This will be followed by Phase 1b, which will be the typical Phase 1 interviews with patients and caregivers.

Phase 2 will be carried out in accordance with the Module Development Guidelines. All included issues will be transformed into items with a 4-point Likert (“not at all”, “a little”, “quite a bit”, and “very much”) response category.

Phase 1 of our project, ended on schedule in February 2024.

• 64 issues were identified from the literature and 8 issues from our Phase 1a qualitative interviews, resulting in a provisional list of 72 issues.
• The 72 issues were rated regarding their relevance and importance by 182 patients from 16 countries and 41 health care professionals from 8 countries.
• Based on the results from patients and health care professionals, the project group decided to keep 54 issues and to add 3 issues from the patients’ comments of Phase 1b resulting in 57 issues for the final list of issues.

Phase 2

The amendment for Phase 2 was approved in May 2024. Draft items for all issues were created and a framework put in place to manage discussions with collaborators about the proposed items.

Wordings and time frames of the items have now been discussed and consent has been reached. Phase II is now completed and the report for Phase I+II was submitted on 17th March 2025.

Based on reviewer feedback received on June 23, 2025, the revised report was submitted August 29, 2025

Phase I completed

Phase II completed

Report Phase I+II submitted on March 17, 2025

Based on reviewer feedback received on June 23, 2025, the revised report was submitted August 29, 2025

Current status:

Work on the application for Phase III and the study protocol has been initiated.

The aim of this project is to develop a questionnaire which assesses the extent of subjective financial burden on cancer patients and survivors. By subjective, we mean to look at how the patient/survivor perceives their financial situation and the implications that has for their life in a broader sense.