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ArticleJournal of cancer survivorship : research and practice2025

Health-related quality of life of long-term adolescent and young adult (AYA) cancer survivors compared to a matched normative population: results of the SURVAYA study.

Silvie H M Janssen, Carla Vlooswijk, Rhodé M Bijlsma, Suzanne E J Kaal, Jan Martijn Kerst, Jacqueline M Tromp, Monique E M M Bos, Tom van der Hulle, Roy I Lalisang, Janine Nuver and 3 more

Registry-linked trialAbstract read
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In one paragraph

Article in Journal of cancer survivorship : research and practice, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05379387 (Health-related Quality of Life and Late Effects Among SURVivors of Cancer in Adolescence and Young Adulthood), which is not on this map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing 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.

NCT05379387 completednot on this map

Health-related Quality of Life and Late Effects Among SURVivors of Cancer in Adolescence and Young Adulthood: The SURVAYA Study

TypeobservationalSponsorThe Netherlands Cancer InstituteRan2019 to 2021Enrolled4,000ConditionsQuality of Life, Late Effect, Survivorship, Lifestyle
3 · Its place in the literature

Who cites it

8 citing papers in PubMed.

  1. Bridging pediatric and adult neuro-oncology: Insights into adolescents and young adults (AYA) central nervous system tumors.Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeutics · 2026
    Review
  2. Factors associated with self-care engagement among oesophageal and gastric cancer survivors: a population-based cross-sectional study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
    Article
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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

13 authors.

Silvie H M JanssenDepartment of Medical Oncology, Netherlands Cancer Institute - Antoni van Leeuwenhoek, 1066 CX, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0003-1406-1739
Carla VlooswijkResearch and Development, Netherlands Comprehensive Cancer Organization, 3511 DT, Utrecht, The Netherlands.ORCID http://orcid.org/0000-0001-8885-6302
Rhodé M BijlsmaDepartment of Medical Oncology, University Medical Center Utrecht, 3584 CX, Utrecht, The Netherlands.ORCID http://orcid.org/0000-0003-0980-6652
Suzanne E J KaalDepartment of Medical Oncology, Radboud University Medical Center, 6525 GA, Nijmegen, The Netherlands.ORCID http://orcid.org/0000-0002-8063-0074
Jan Martijn KerstDepartment of Medical Oncology, Netherlands Cancer Institute - Antoni van Leeuwenhoek, 1066 CX, Amsterdam, The Netherlands.
Jacqueline M TrompDepartment of Medical Oncology, Amsterdam University Medical Centers, 1105 AZ, Amsterdam, The Netherlands.ORCID http://orcid.org/0009-0008-2597-5986
Monique E M M BosDepartment of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD, Rotterdam, The Netherlands.ORCID http://orcid.org/0000-0002-9415-6342
Tom van der HulleDepartment of Medical Oncology, Leiden University Medical Center, 2333 ZA, Leiden, The Netherlands.ORCID http://orcid.org/0000-0002-2296-1828
Roy I LalisangDivision of Medical Oncology, Department of Internal Medicine, UMC+ Comprehensive Cancer Center, GROW-School of Oncology and Reproduction, Maastricht University Medical Center+, 6229 HX, Maastricht, The Netherlands.ORCID http://orcid.org/0000-0002-9752-0947
Janine NuverDepartment of Medical Oncology, University Medical Center Groningen, 9713 GZ, Groningen, The Netherlands.ORCID http://orcid.org/0000-0001-7966-5301
Mathilde C M KouwenhovenDepartment of Neurology, Amsterdam UMC, Cancer Center Amsterdam, Amsterdam University Medical Centers, Location VUmc, 1081 HV, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0001-5252-4365
Winette T A van der GraafDepartment of Medical Oncology, Netherlands Cancer Institute - Antoni van Leeuwenhoek, 1066 CX, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0001-7549-3338
Olga HussonDepartment of Medical Oncology, Netherlands Cancer Institute - Antoni van Leeuwenhoek, 1066 CX, Amsterdam, The Netherlands. o.husson@erasmusmc.nl.ORCID http://orcid.org/0000-0002-1387-8686

Funding

KWF Kankerbestrijding Grant 11788netherlands organization for scientific research # 198.007
6 · The paper itself

Abstract

purposeHealth-related quality of life (HRQoL) is a commonly assessed patient-reported outcome that might be especially relevant for the adolescent and young adult (AYA) cancer survivor population. However, limited data is available regarding the HRQoL of long-term AYA cancer survivors compared to a matched normative population and associated factors.

methodsAYA cancer survivors (18-39 years at initial diagnosis; 5-20 years post-diagnosis), identified by the Netherlands Cancer Registry (NCR), were invited for participation in the SURVAYA questionnaire study. Participants self-reported their socio-demographics, health-related conditions, healthcare use, positive life outlook, and HRQoL (EORTC QLQ-C30). An age- and sex-matched normative population was randomly composed. Clinical data were retrieved from the NCR.

resultsA total of 3745 AYAs (on average 32 years old at diagnosis, 12 years post-diagnosis) and 517 peers without cancer (normative population) were included. All functioning scales showed significant differences, with AYA cancer survivors scoring lower: cognitive (77.9 vs. 92.2), role (83.2 vs. 91.3), social (87.9 vs. 93.6), physical (91.5 vs. 94.3), and emotional functioning (79.5 vs. 83.4). No significant difference was observed in global QoL. Female sex, lower educational attainment, older age at diagnosis, several tumor types, radiotherapy, chemotherapy, higher stage, more health-related conditions, and more healthcare visits were negatively associated with several HRQoL scales.

conclusionsAYA cancer survivors face worse HRQoL compared to peers in all functioning domains, but it is most pronounced in cognitive functioning. This study underlines the need for timely cancer survivorship care to regain, improve, and ensure the quality of life of current and future AYA cancer survivors. CLINICAL

trial registrationNCT05379387.

Indexed as

Adolescents and young adultsAYAsCancerEORTC QLQ-C30Health-related quality of lifeSurvivorship

Identifiers

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Registered trials

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.