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Review
. 2025 Nov 1;37(6):603-610.
doi: 10.1097/CCO.0000000000001189. Epub 2025 Sep 22.

Patient-proxy agreement on health-related quality of life assessment in cancer patients

Josien C C Scheepens  1 , Florien W Boele  2   3   4 , Johan A F Koekkoek  1
Affiliations
Review

Patient-proxy agreement on health-related quality of life assessment in cancer patients

Josien C C Scheepens et al. Curr Opin Oncol. .

Abstract

Purpose of review: The aim of this study was to examine the role of proxy-reported outcomes in oncology, particularly in neuro-oncology, where cognitive impairment and disease progression often limit patients' ability to self-report. With increasing emphasis on patient-centered care and regulatory requirements for clinical outcome assessments (COAs), it is essential to understand when and how proxy reports can substitute or complement patient-reported outcomes (PROs), particularly in the assessment of health-related quality of life (HRQoL).

Recent findings: Use of proxy-reported outcomes in cancer clinical trials is common. Proxy reports can help reduce missing data and selection bias by replacing PROs in patients with a poor health condition. However, studies consistently show poor to moderate agreement between patient and proxy reports of HRQoL outcomes, with the lowest congruence in less observable areas such as emotional functioning. Most proxy reports rely on PRO instruments not validated for proxy use, and heterogeneity in statistical methods, proxy selection, and proxy instruction further complicates interpretation.

Summary: While proxy-reported outcomes should not replace PROs when patients can self-report, they offer valuable insights when self-report is not feasible. When standardized methods are followed, such as using validated instruments and clearly defining the reporting perspective, proxy reports can serve as a useful alternative in clinical trials and clinical practice.

Keywords: health-related quality of life; neuro-oncology; oncology; patient-reported outcomes; proxy-reported outcomes.

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References

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    1. Lapin B, Cohen ML, Corsini N, et al. Development of consensus-based considerations for use of adult proxy reporting: an ISOQOL task force initiative. J Patient Rep Outcomes 2023; 7:52.
    1. U.S. Department of Health and Human Services FDA. Patient-reported outcome measures: use in medical product development to support labeling claims. US Food and Drug Administration; 2009. https://www.fda.gov/media/77832/download . [Accessed 29 April 2025].
    1. Roydhouse JK, Cohen ML, Eshoj HR, et al. The use of proxies and proxy-reported measures: a report of the international society for quality of life research (ISOQOL) proxy task force. Qual Life Res 2022; 31:317–327.
    1. Boele FW, Hertler C, Sherwood P, et al. Reporting standards in randomized controlled trials involving neuro-oncology caregivers: A systematic review report from the RANO-Cares working group. Neurooncol Pract 2025; 12:19–33.

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