For patients, quality of life is the confluence and interaction of multiple factors related to both the disease and to how life is lived with and beyond the disease. When tasked with completing a quality-of-life questionnaire, patients may well wonder for whose benefit this is, which really needs to be made clear. We discuss some of the issues around quality-of-life questionnaires and the challenge of the heterogeneity of the patient experience. PATIENT SUMMARY: This mini-review discusses quality-of-life measurements from the patient perspective and the need to take account of the patient's life and not just the disease.

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http://dx.doi.org/10.1016/j.euf.2023.03.013DOI Listing

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