German researchers published on 2 May 2019 in the Annals of Oncology findings from a systematic literature review which show that for measuring and quantifying financial distress experienced by cancer patients, available instruments may not be capable of ascertaining all relevant domains of a patients’ distress perception. Instruments should further be developed based on identified six domains and need to be adjusted to different health systems.
The authors from the Department of Health Economics and Health Care Management, School of Public Health, Bielefeld University, Bielefeld, and the National Centre for Tumour Diseases, Department of Medical Oncology, Programme for Ethics and Patient Oriented Care, University Hospital Heidelberg, Heidelberg University, Germany wrote that patients experiencing financial distress as a side effect of cancer are not only reported in the US, but also in third-party payer healthcare systems in Europe.
Since validated survey instruments are a prerequisite for robust and comparable results, German investigators led by Prof. Eva Winkler aimed to compile and classify available instruments to enable a better understanding of the underlying construct of financial toxicity and to facilitate further studies that are adjustable to various healthcare systems.
They performed a systematic literature search on studies that provide data on perceived cancer-related financial distress experienced by adult patients using PubMed, CINAHL and Web of Science databases up to 2018.
The study team analyzed all detected instruments, items domains and questions with regard to their wording, scales and the domains of financial distress covered.
Among 3298 records screened, 41 publications based on 40 studies matched inclusion criteria. Based on the analysis of 352 different questions the study team identified six relevant subdomains that represent perceptions of and reactions to experienced financial distress:
- Active financial spending
- Use of passive financial resources
- Psychosocial responses
- Support seeking
- Coping with care
- Coping with ones’ lifestyle.
The study team found an inconsistent coverage and use of these domains that makes it difficult to compare and quantify the prevalence of financial distress. Moreover, some existing instruments do not reflect relevant domains for patients in third-party payer systems.
The authors concluded that there is neither a consistent understanding of the construct of financial burden nor available instruments cover all relevant aspects of a patients’ distress perception. They encouraged use of the identified six domains to further develop survey instruments and adjust them to different health systems.
The authors suggested that a discussion on item domains and taxonomy could be coordinated by the EORTC, as they already have experience in developing cancer-specific survey tools, such as the EORTC QLQ-C30, that constitutes an important contribution to the assessment of quality of life of cancer patients. In addition, the study team wondered if discussion could be initiated with ESMO on whether questions on the subjective financial distress should also be included in the ESMO Magnitude of Clinical Benefit Scale to enable a better understanding of new treatment options and their relative financial implications to patients.
The study was funded by an unrestricted research grant made by IPSEN Pharma GmbH.
Witte J, Mehlis K, Surmann B, et al. Methods for measuring financial toxicity after cancer diagnosis and treatment: a systematic review and its implications. Annals of Oncology; Published online 2 May 2019. pii: mdz140. doi: 10.1093/annonc/mdz140.