ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2020
Strategies to improve patient-reported outcome completion rates in longitudinal studies.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 1 of them a synthesis that pooled it.
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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
21 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Variability of quality-of-life measurements and reporting in randomised controlled trials of pancreatic cancer: a systematic review.BMJ open · 2024Pooled it
- Interventions influencing patient-reported outcomes (PROs) response rates in cancer: a scoping review.Journal of cancer survivorship : research and practice · 2026Review
- 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
- Anticipating incomplete patient-reported outcomes in schizophrenia: a machine learning approach to predict the occurrence of missing data.Health and quality of life outcomes · 2026Article
- Research on the integration development model of "language + culture + tourism + older adults care" based on digital technology.Frontiers in public health · 2026Article
- An Oversampling-Enhanced Multi-Class Imbalanced Classification Framework for Patient Health Status Prediction Using Patient-Reported Outcomes.IEEE access : practical innovations, open solutions · 2025Article
- Improved clinical care and capacity through an integrated electronic patient-reported outcome measure and health record system in inflammatory arthritis.Rheumatology advances in practice · 2025Article
- Real-world patterns in remote longitudinal study participation: A study of the Swiss Multiple Sclerosis Registry.PLOS digital health · 2024Article
- Relationship between reasons for intermittent missing patient-reported outcomes data and missing data mechanisms.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Missingness mechanisms and generalizability of patient reported outcome measures in colorectal cancer survivors - assessing the reasonableness of the "missing completely at random" assumption.BMC medical research methodology · 2024Article
- Remote Symptom Monitoring Using Patient-Reported Outcomes in Patients With Chronic Kidney Disease: Process Evaluation of a Randomized Controlled Trial.JMIR formative research · 2024Article
- Implementing a Patient-Reported Outcome Dashboard in Oncology Telemedicine Encounters: Clinician and Patient Adoption and Acceptability.JCO oncology practice · 2024Article
- Group, Blended and Individual, Unguided Online Delivery of Mindfulness-Based Cognitive Therapy for People With Cancer: Feasibility Uncontrolled Trial.JMIR formative research · 2024Article
- Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review.Health and quality of life outcomes · 2023Article
- Patient-reported outcomes in metastatic renal cell carcinoma trials using combinations versus sunitinib as first-line treatment.Nature reviews. Urology · 2023Review
- Clinicians' perspectives on the integration of electronic patient-reported outcomes into dermatology clinics: a qualitative study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022Article
- Quantifying the effect email reminders have on patient reported outcome measure returns in a large prostate cancer registry.Journal of patient-reported outcomes · 2022Article
- Clinical Outcome Assessment in Cancer Rehabilitation and the Central Role of Patient-Reported Outcomes.Cancers · 2021Review
- Feasibility of implementing a text-based symptom-monitoring program of endometrial, ovarian, and breast cancer patients during treatment.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2021Article
- Bone Pain in Multiple Myeloma (BPMM)-A Protocol for a Prospective, Longitudinal, Observational Study.Cancers · 2021Article
Corrections and comments
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Authors and funding
16 authors.
Funding
Abstract
purposeThe quality of patient-reported outcome (PRO) data can be compromised by non-response (NR) to scheduled questionnaires, particularly if reasons for NR are related to health problems, which may lead to unintended bias. The aim was to investigate whether electronic reminders and real-time monitoring improve PRO completion rate.
methodsThe population-based study "Quality of life in Danish multiple myeloma patients" is a longitudinal, multicentre study with consecutive inclusion of treatment-demanding newly diagnosed or relapsed patients with multiple myeloma. Education of study nurses in the avoidance of NR, electronic reminders, 7-day response windows and real-time monitoring of NR were integrated in the study. Patients complete PRO assessments at study entry and at 12 follow-up time points using electronic or paper questionnaires. The effect of the electronic reminders and real-time monitoring were investigated by comparison of proportions of completed questionnaires before and after each intervention.
resultsThe first 271 included patients were analysed; of those, 249 (85%) chose electronic questionnaires. Eighty-four percent of the 1441 scheduled PRO assessments were completed within the 7-day response window and 11% after real-time monitoring, achieving a final PRO completion rate of 95%. A significant higher proportion of uncompleted questionnaires were completed after the patients had received the electronic reminder and after real-time monitoring.
conclusionsElectronic reminders and real-time monitoring contributed to a very high completion rate in the study. To increase the quality of PRO data, we propose integrating these strategies in PRO studies, however highlighting that an increase in staff resources is required for implementation.
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