ArticleValue in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research2019
Perceptions of Response Burden Associated with Completion of Patient-Reported Outcome Assessments in Oncology.
Article in Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers, 2 of them syntheses that pooled it.
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
32 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Exploring the role of health-related quality of life measures in predictive modelling for oncology: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Pooled it
- Variability of quality-of-life measurements and reporting in randomised controlled trials of pancreatic cancer: a systematic review.BMJ open · 2024Pooled it
- Patient adherence and response time in electronic patient-reported outcomes: insights from three longitudinal clinical trials.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Trial
- Determinants of Chemotherapy Convenience and Satisfaction: The Role of Symptom and Psychological Burden in Cancer Patients-A Cross-Sectional Study.Healthcare (Basel, Switzerland) · 2026Article
- A qualitative study of cancer clinical trial network consumers' acceptability of the modular approach to patient-reported outcome measurement: how much of it is "common sense"?Journal of patient-reported outcomes · 2026Article
- Acceptable respondent burden in patient-reported outcome (PRO) assessment in oncology clinical trials: a mixed methods study with patients and trialists.Journal of patient-reported outcomes · 2026Article
- Patient-Reported Outcome Measures Used to Assess Surgical Interventions for Pelvic Organ Prolapse, Stress Urinary Incontinence and Mesh Complications: A Scoping Review for the Development of the APPRAISE PROM.BJOG : an international journal of obstetrics and gynaecology · 2026Article
- Observational
- Developing, Analyzing, and Interpreting Outcome Assessments to Improve Endpoints in Infectious Diseases Clinical Research.Clinical infectious diseases : an official publication of the Infectious Diseases Society of America · 2025Article
- An Evaluation of Time Spent Completing Electronically Collected Patient-Reported Outcomes in Clinical Trials.Therapeutic innovation & regulatory science · 2025Article
- Using patient-reported outcome measures in clinical trials: perspectives for and against a modular approach.The Medical journal of Australia · 2025Article
- A new generation of patient-reported outcome measures with large language models.Journal of patient-reported outcomes · 2025Article
- Patient perceptions of an electronic-health-record-based rheumatoid arthritis outcomes dashboard: a mixed-methods study.BMC medical informatics and decision making · 2024Article
- [Patient-reported outcomes-the role of the patient's subjective perspective for research and clinical care].Urologie (Heidelberg, Germany) · 2024Review
- Enhanced clinical decisions for management of benign prostatic hyperplasia using patient-reported outcomes: protocol for a prospective observational study.BMC urology · 2024Observational
- Enhanced Clinical Decisions for Management of Benign Prostatic Hyperplasia using Patient-Reported Outcomes: Protocol for a Prospective Observational Study.Research square · 2024Article
- Administering selected subscales of patient-reported outcome questionnaires to reduce patient burden and increase relevance: a position statement on a modular approach.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Recommendations to address respondent burden associated with patient-reported outcome assessment.Nature medicine · 2024Review
- Not all questions are created equal: the weight of the Oxford Knee Scores questions in a multicentric validation study.Journal of orthopaedics and traumatology : official journal of the Italian Society of Orthopaedics and Traumatology · 2023Article
- Article
Corrections and comments
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Authors and funding
9 authors.
Funding
Abstract
backgroundPatient response burden is often raised as a human subject concern in consideration of the length or complexity of patient-reported outcome (PRO) instruments used in oncology.
objectivesTo quantify patient response burden and identify its predictive factors.
methodsData were collected presurgically during a prospective trial that used a comprehensive symptom and health-related quality-of-life (HRQOL) PRO assessment. A subset of patients also completed HRQOL interviews. Response burden was captured using an internally developed six-item instrument. Demographic and clinical characteristics as well as HRQOL scores were examined as potential predictors using hierarchical regression. Response burden was used to predict participant dropout at the first follow-up interval.
resultsA total of 275 patients (mean age 67.5 years; 23.6% female) completed surveys (n = 126) or surveys in addition to interviews (n = 149). Patients experienced low response burden (mean 12.19 ± 11.65). Repetitive questions were identified by 60 patients (21.8%), whereas 31.6% indicated that additional information should be gathered; 35 patients (12.7%) identified repetitive questions and expressed a desire for additional items. Low self-reported cognitive function was a significant predictor of higher response burden (β = -0.20; t(270) = -3.38; P = 0.01; model-adjusted R
conclusionsDespite completing a large battery of PRO measures and interviews, patients reported minimal response burden, with nearly one-third expressing that more questions should have been asked. Patients with lower cognitive function are more likely to report higher response burden when completing PRO measures. Further examination of patient characteristics related to response burden may reveal useful pathways for tailoring patient-centered interventions.
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