Evidence map›Paper›PMID 34904948›Full record

Trial reportJournal of medical Internet research2021

Web-Based Return of Individual Patient-Reported Outcome Results Among Patients With Lymphoma: Randomized Controlled Trial.

Simone Oerlemans, Lindy Paulina Johanna Arts, Jacobien M Kieffer, Judith Prins, Mels Hoogendoorn, Marjolein van der Poel, Ad Koster, Chantal Lensen, Wendy Bernadina Catharina Stevens, Djamila Issa and 7 more

Abstract readRandomized Controlled Trial
In one paragraph

Trial report in Journal of medical Internet research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
13citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

13 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Trial
  3. A 360 Degree Qualitative Ethical Assessment of Reporting Patient Reported Outcomes.Journal of empirical research on human research ethics : JERHRE · 2026
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

17 authors.

Simone Oerlemans *Department of Research and Development, Netherlands Comprehensive Cancer Organisation, Utrecht, Netherlands.ORCID 0000-0003-1595-7262
Lindy Paulina Johanna Arts *Department of Research and Development, Netherlands Comprehensive Cancer Organisation, Utrecht, Netherlands.ORCID 0000-0002-5052-4238
Jacobien M KiefferDivision of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, Netherlands.ORCID 0000-0003-2042-9245
Judith PrinsDepartment of Medical Psychology, Radboud University Medical Center, Nijmegen, Netherlands.ORCID 0000-0001-5720-6091
Mels HoogendoornDepartment of Hematology, Medical Center Leeuwarden, Leeuwarden, Netherlands.ORCID 0000-0001-8032-2592
Marjolein van der PoelDepartment of Internal Medicine, Division of Hematology, GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre, Maastricht, Netherlands.ORCID 0000-0002-1305-4150
Ad KosterDepartment of Internal Medicine, VieCuri Medical Centre, Venlo/Venray, Netherlands.ORCID 0000-0001-6067-3272
Chantal LensenDepartment of Internal Medicine, Bernhoven Hospital, Uden, Netherlands.ORCID 0000-0002-0533-4881
Wendy Bernadina Catharina StevensDepartment of Hematology, Radboud University Medical Center, Nijmegen, Netherlands.ORCID 0000-0003-3841-9280
Djamila IssaDepartment of Internal Medicine, Jeroen Bosch Hospital, 's-Hertogenbosch, Netherlands.ORCID 0000-0002-4512-7019
Johannes F M PruijtDepartment of Internal Medicine, Jeroen Bosch Hospital, 's-Hertogenbosch, Netherlands.ORCID 0000-0002-9802-9455
Margriet OosterveldDepartment of Internal Medicine, Canisius-Wilhelmina Hospital, Nijmegen, Netherlands.ORCID 0000-0002-6742-9261
René van der GriendDepartment of Internal Medicine, Diakonessenhuis, Utrecht/Zeist, Netherlands.ORCID 0000-0002-3609-4550
Marten NijzielDepartment of Internal Medicine, Catharina Hospital, Eindhoven, Netherlands.ORCID 0000-0001-9069-4939
Lidwine TickDepartment of Internal Medicine, Máxima Medical Centre, Veldhoven, Netherlands.ORCID 0000-0002-0771-5231
Eduardus F M PosthumaDepartment of Internal Medicine, Reinier de Graaf Group, Delft, Netherlands.ORCID 0000-0002-0882-2346
Lonneke V van de Poll-FranseDepartment of Research and Development, Netherlands Comprehensive Cancer Organisation, Utrecht, Netherlands.ORCID 0000-0003-0413-6872

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThere has been a cultural shift toward patient engagement in health, with a growing demand from patients to access their results.

objectiveThe Lymphoma Intervention (LIVE) trial is conducted to examine the impact of return of individual patient-reported outcome (PRO) results and a web-based self-management intervention on psychological distress, self-management, satisfaction with information, and health care use in a population-based setting.

methodsReturn of PRO results included comparison with age- and sex-matched peers and was built into the Patient-Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship registry. The self-management intervention is an adaptation of a fully automated evidence-based intervention for breast cancer survivors. Patients with lymphoma who completed the web-based questionnaire were equally randomized to care as usual, return of PRO results, and return of PRO results plus self-management intervention. Patients completed questionnaires 9 to 18 months after diagnosis (T0; n=227), 4 months (T1; n=190), 12 months (T2; n=170), and 24 months (T3; n=98).

resultsOf all invited patients, 51.1% (456/892) responded and web-based participants (n=227) were randomly assigned to care as usual (n=76), return of PRO results (n=74), or return of PRO results and access to Living with lymphoma (n=77). Return of PRO results was viewed by 76.7% (115/150) of those with access. No statistically significant differences were observed for psychological distress, self-management, satisfaction with information provision, and health care use between patients who received PRO results and those who did not (P>.05). Use of the self-management intervention was low (2/76, 3%), and an effect could therefore not be determined.

conclusionsReturn of individual PRO results seems to meet patients' wishes but had no beneficial effects on patient outcome. No negative effects were found when individual PRO results were disclosed, and the return of individual PRO results can therefore be safely implemented in daily clinical practice.

trial registrationNetherlands Trial Register NTR5953; https://www.trialregister.nl/trial/5790. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1186/s13063-017-1943-2.

Indexed as

LymphomaResearch DesignHumansInternetNetherlandsPatient Reported Outcome Measureslymphomapatient-reported outcomesrandomized controlled trialreturn of individual resultsself-management

Identifiers

PMID34904948
PMCPMC8715355

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.