ArticleJournal of medical Internet research2017
"Am I normal?" The Wishes of Patients With Lymphoma to Compare Their Patient-Reported Outcomes With Those of Their Peers.
Article in Journal of medical Internet research, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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
17 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Patient-Reported Outcome Measures (PROMS) in Lymphoma.Current oncology (Toronto, Ont.) · 2025Pooled it
- Web-Based Return of Individual Patient-Reported Outcome Results Among Patients With Lymphoma: Randomized Controlled Trial.Journal of medical Internet research · 2021Trial
- Lenalidomide maintenance for diffuse large B-cell lymphoma patients responding to R-CHOP: quality of life, dosing, and safety results from the randomised controlled REMARC study.British journal of haematology · 2020Trial
- A mixed methods study on patients' and healthcare professionals' understanding of the graphical presentation of patient-reported outcome data at an inpatient unit for psychosomatic medicine.Journal of patient-reported outcomes · 2026Article
- Patient-reported symptom burden and health-related quality of life in patients with aggressive Non-Hodgkin lymphoma: a cross-sectional study.BMC cancer · 2025Article
- BREAST-Q REACT: Qualitative Assessment of the Design, Functionality, and Clinical Utility of a New Score Interpretation Tool.Annals of surgical oncology · 2024Article
- Determinants and mediating mechanisms of quality of life and disease-specific symptoms among thyroid cancer patients: the design of the WaTCh study.Thyroid research · 2023Article
- Need for numbers: assessing cancer survivors' needs for personalized and generic statistical information.BMC medical informatics and decision making · 2022Article
- A Narrative Review on the Collection and Use of Electronic Patient-Reported Outcomes in Cancer Survivorship Care with Emphasis on Symptom Monitoring.Current oncology (Toronto, Ont.) · 2022Review
- Measuring Clinical, Biological, and Behavioral Variables to Elucidate Trajectories of Patient-Reported Outcomes: The PROFILES Registry.Journal of the National Cancer Institute · 2022Article
- Exploring Cancer Survivor Needs and Preferences for Communicating Personalized Cancer Statistics From Registry Data: Qualitative Multimethod Study.JMIR cancer · 2021Article
- Article
- Communicating tailored risk information of cancer treatment side effects: Only words or also numbers?BMC medical informatics and decision making · 2020Article
- Complementing clinical cancer registry data with patient reported outcomes: A feasibility study on routine electronic patient-reported outcome assessment for the Austrian Myelome Registry.European journal of cancer care · 2019Article
- How Returning Aggregate Research Results Impacts Interest in Research Engagement and Planned Actions Relevant to Health Care Decision Making: Cohort Study.Journal of medical Internet research · 2018Article
- Cancer survivors not participating in observational patient-reported outcome studies have a lower survival compared to participants: the population-based PROFILES registry.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2018Article
- Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundProviding feedback to patients on their patient-reported outcomes (PROs) can help patients in monitoring their functioning and symptoms and may help empower them.
objectiveThe objective of this study was to investigate whether patients with lymphoma wished to receive PRO feedback, including the option to compare their scores with those of their peers, and how this feedback was evaluated.
methodsWe invited 64 patients participating in a lymphoma cohort who were eligible for a follow-up questionnaire and gave them the option to receive PRO feedback. Patients completed questions about health-related quality of life (HRQoL) and symptoms. PRO feedback was provided via bar charts.
resultsOf the 64 invited patients, 45 participated (response rate 70%) and 36 of those (80%) wished to receive PRO feedback. The vast majority (34/36, 94%) compared their scores with those of a lymphoma reference cohort, and 64% (23/36) compared their score with those of a normative population without cancer. All patients wished to receive feedback on their HRQoL, and 29 (81%) to 33 (92%) wanted feedback on their functioning, fatigue, neuropathy, anxiety, and depressive symptoms. Of the 36 participants wishing to receive PRO feedback, 35 (97%) viewed it as being useful, with reassurance and knowledge about their own functioning in relation to what is "normal" being the most frequently mentioned reasons.
conclusionsA high number of patients with lymphoma wished to receive PRO feedback. Patients reported the comparison of their scores versus a lymphoma reference cohort as most valuable. Further research should investigate whether PRO feedback could increase empowerment and possibly improve HRQoL.
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