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. 2025 Jun 17.
doi: 10.1007/s11764-025-01818-0. Online ahead of print.

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  1   2   3 , Carla Vlooswijk  4 , Rhodé M Bijlsma  5 , Suzanne E J Kaal  6 , Jan Martijn Kerst  1 , Jacqueline M Tromp  7 , Monique E M M Bos  2 , Tom van der Hulle  8 , Roy I Lalisang  9 , Janine Nuver  10 , Mathilde C M Kouwenhoven  11 , Winette T A van der Graaf  1   2 , Olga Husson  12   13   14
Affiliations

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 et al. J Cancer Surviv. .

Abstract

Purpose: Health-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.

Methods: AYA 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.

Results: A 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.

Conclusions: AYA 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 registration: NCT05379387.

Keywords: AYAs; Adolescents and young adults; Cancer; EORTC QLQ-C30; Health-related quality of life; Survivorship.

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Conflict of interest statement

Declarations. Ethics approval: The study was conducted in accordance with the Declaration of Helsinki and approved by the Netherlands Cancer Institute Institutional Review Board (NCI IRB-IRBd18122) on February 6 th 2019. Consent to participate: Informed consent was obtained from all individual participants included in this study. Competing interests: The authors declare no competing interests.

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References

    1. US Department of Health Human Services FDA Center for Drug Evaluation Research laurie. burke@ fda. hhs. gov, US Department of Health Human Services FDA Center for Biologics Evaluation Research toni. stifano@ fda. hhs. gov, and US Department of Health Human Services FDA Center for Devices Radiological Health SXD@ cdrh. fda. gov, Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance. Health Qual Life Outcomes. 2006;4(1):79
    1. Sodergren SC, Husson O, Robinson J, Rohde GE, Tomaszewska IM, Vivat B, Dyar R, Darlington AS, Group E.Q.o.L. Systematic review of the health-related quality of life issues facing adolescents and young adults with cancer. Qual Life Res. 2017;26:1659–1672
    1. Janssen SH, van der Graaf WT, van der Meer DJ, Manten-Horst E, Husson O. Adolescent and young adult (AYA) cancer survivorship practices: an overview. Cancers. 2021;13(19):4847. - DOI - PubMed - PMC
    1. Report Adolescent and Young Adult Oncology Progress Review Group. U.S. Department of Health and Human Services and LIVESTRONG Young Adult Alliance. Closing the Gap: Research and Care imperatives for Adolescents and Young Adults with Cancer. 2006.
    1. Darlington A-SE, Wakefield CE, van Erp LM, van der Graaf WT, Cohn RJ, Grootenhuis MA. Psychosocial consequences of surviving cancer diagnosed and treated in childhood versus in adolescence/young adulthood: a call for clearer delineation between groups. Cancer. 2022;128(14):2690–4. - DOI - PubMed

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