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

Author(s)

Phu Duy Pham, MSc, MSPH1, Jasper Ubels, Ph.D.1, Rachel D. Eckford, M.H.R.1, Michael Schlander, MBA, PhD, MD2;
1German Cancer Research Center (/DKFZ), Division of Health Economics, Heidelberg, Germany, 2German Cancer Research Center (DKFZ), Head of Division, Heidelberg, Germany
OBJECTIVES: A number of instruments have been developed to measure the socioeconomic impact (SEI) of cancer from the perspective of patients and their relatives. However, their comparative performance in terms of quality and, in particular, their content validity is not entirely clear. Therefore, the present analysis aimed (1) to report on a standardized assessment of the quality of instruments designed to measure SEI, and (2) to assess the content validity of these instruments using the conceptual framework proposed by the Organization of European Cancer Institutes (OECI) Task Force as a reference.
METHODS: We identified articles measuring SEI of cancer from an internal database described earlier. We used these papers as the initial pearls in a systematic review of published articles that applied and reported validation of measurement instruments, using a pearl growing search strategy in PubMed, Web of Science and Google Scholar databases. Using the Evaluating the Measurement of Patient-Reported Outcomes (EMPRO) tool, we produced quantitative assessments and a formal comparison of the quality of the identified instruments. To examine content validity, we allocated each instrument’s items against the themes and sub-themes of the OECI framework for SEI analysis.
RESULTS: We found 21 validation studies using nine original instruments. The number of articles by instrument varied significantly. The COST instrument was the most frequently used, validated in ten different settings, whereas some newer instruments have not been applied yet. This variation resulted in significant differences in EMPRO overall scores among these instruments. Regarding content validity, we found that none of the instruments covered all themes and sub-themes of the OECI framework.
CONCLUSIONS: The overall and domain/specific scores using the EMPRO tool varied between the instruments. Further research appears warranted to confirm the quality and to improve the content validity of instruments designed to measure the SEI of cancer.

Conference/Value in Health Info

2025-05, ISPOR 2025, Montréal, Quebec, CA

Value in Health, Volume 28, Issue S1

Code

PCR85

Topic

Patient-Centered Research

Topic Subcategory

Instrument Development, Validation, & Translation, Patient-reported Outcomes & Quality of Life Outcomes

Disease

SDC: Oncology

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