ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2022
The expanded prostate cancer index composite short form (EPIC-26) for measuring health-related quality of life: content analysis of patients' spontaneous comments written in survey margins.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
6 citing papers in PubMed.
- Sexual function outcomes following prostate cancer treatment in sexual and gender minority populations: a mixed-methods systematic review.Translational andrology and urology · 2026Review
- Article
- Quality of Life in Japanese Men Treated with Intensity Modulated Radiotherapy for Localized Prostate Cancer: Three-Year Longitudinal Evaluation Using Patient-Reported Outcomes of the Expanded Prostate Index Composite (EPIC).Journal of clinical medicine · 2026Article
- Using patient-reported outcome measures in clinical trials: perspectives for and against a modular approach.The Medical journal of Australia · 2025Article
- Missingness in the expanded prostate cancer index short form (EPIC-26) - prevalence, patterns, and explanatory factors.Health and quality of life outcomes · 2023Article
- What do Veterans with homeless experience want us to know that we are not asking? A qualitative content analysis of comments from a national survey of healthcare experience.Health & social care in the community · 2022Article
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
introductionThis study investigates comments that prostate cancer patients spontaneously write in the margins of the Expanded Prostate Cancer Index Short Form (EPIC-26) questionnaire. We aim to show the possible barriers that patients face while answering the survey, and to consider how these barriers may affect the response data generated. We investigate the kind of information patients' comments on EPIC-26 contain, and patients' motivations to provide this information. We also study why some EPIC domains spark more comments than others.
methodWe analyzed 28 pages of transcribed comments and four pages of supplementary letters from our survey participants (n = 496). Using inductive content analysis, we generated 10 categories describing the content of participants' comments, and four themes demonstrating their motives for commenting. The comments regarding each EPIC domain were quantified to discover any differences between domains.
resultsThe sexual domain of EPIC-26 provoked over half of all comments. Patients without recent sexual activity or desire had difficulties answering sexual function questions 8-10. The lack of instructions on whether to take erectile aid use into account when answering erectile function questions led to a diversity of answering strategies. Patients with urinary catheters could not find suitable answer options for questions 1-4. All domains sparked comments containing additional information about experienced symptoms.
conclusionPatients are mainly willing to report their symptoms, but a lack of suitable answer options causes missing data and differing answering strategies in the sexual and urinary domains of EPIC-26, weakening the quality of the response data received.
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Registered trials
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