Evidence map›Paper›PMID 39377935›Full record

ReviewJournal of cancer survivorship : research and practice2026

Patient-reported outcomes in cancer survivorship: insights from two decades of population-based PROFILES registry research.

Floortje Mols, Dounya Schoormans, Simone Oerlemans, Nicole Horevoorts, Nicole Ezendam, Natasja Raijmakers, Lonneke van de Poll-Franse

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Journal of cancer survivorship : research and practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–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

3 citing papers in PubMed.

  1. Article
  2. Adding home-use BIA scales, online food diaries, and tape-measures to large-scale questionnaire studies: Insights from the population-based PROFILES registry research.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026
    Article
  3. Article
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

7 authors.

Floortje MolsCoRPS - Center of Research on Psychological Disorders and Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, PO Box 90153, 5000 LE, Tilburg, The Netherlands. F.Mols@tilburguniversity.edu.ORCID http://orcid.org/0000-0003-0818-2913
Dounya SchoormansCoRPS - Center of Research on Psychological Disorders and Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, PO Box 90153, 5000 LE, Tilburg, The Netherlands.
Simone OerlemansDepartment of Research & Development, Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, The Netherlands.
Nicole HorevoortsCoRPS - Center of Research on Psychological Disorders and Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, PO Box 90153, 5000 LE, Tilburg, The Netherlands.
Nicole EzendamCoRPS - Center of Research on Psychological Disorders and Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, PO Box 90153, 5000 LE, Tilburg, The Netherlands.
Natasja RaijmakersDepartment of Research & Development, Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, The Netherlands.
Lonneke van de Poll-FranseDepartment of Research & Development, Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, The Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeWhen the field of cancer survivorship research was in its infancy, the PROFILES registry was set up in 2004 to monitor patient-reported outcomes (PROs) in survivors and a normative population. This scoping review aims to summarize lessons learned from developing a population-based PRO registry, focusing on study methodologies, data collection shifts, data utilization, multidisciplinary collaboration, societal impact, and data sharing.

methodsA systematic computerized literature search through PubMed was performed to collect all publications using data from the PROFILES registry between January 1, 2004, and December 31, 2023.

resultsThe PROFILES registry's research today encompassed 249 papers from 35 studies. Key insights include the importance of multi-hospital collaboration, which enhances participant inclusion and result generalizability. Optimizing response rates and patient inclusion is achieved through proactive data collection methods such as inclusion by health care professionals, and using both web-based and paper questionnaires. Longitudinal studies, despite their intensive data collection efforts, provide critical insights into the consequences of cancer and its treatment on patient-reported outcomes (PROs) from diagnosis through survivorship. Combining PRO data with comprehensive clinical registry data ensures reliable datasets, crucial for drawing meaningful conclusions. The shift towards multidisciplinary collaboration, open-access publishing, and data sharing all contribute to accessible and impactful research.

conclusionsThis review highlights key insights from the PROFILES registry, emphasizing multi-hospital collaboration, proactive data collection, and the integration of PROs with clinical data. IMPLICATIONS FOR CANCER SURVIVORS: These lessons can guide future research on cancer survivorship, improving methodologies to enhance survivorship care and quality of life through multidisciplinary collaboration and data sharing.

Indexed as

Cancer SurvivorsNeoplasmsPatient Reported Outcome MeasuresRegistriesSurvivorshipHumansQuality of LifeCancerPatient-reported outcomesPROFILESRegistrySurvivorship

Identifiers

PMID39377935
PMCPMC13144259

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.