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NCT05379387

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

Completed Last updated 2 June 2022
What this trial tests

trial in Quality of Life in 4,000 participants. Completed in 1 June 2021.

Timeline
1 May 2019
Primary endpoint
1 June 2021
1 June 2021

Quick facts

Lead sponsorThe Netherlands Cancer Institute
StatusCompleted
Study typeOBSERVATIONAL
Enrollment4,000
Start date1 May 2019
Primary completion1 June 2021
Estimated completion1 June 2021
Sites1 location across Netherlands

Conditions studied

Sponsor

The Netherlands Cancer Institute

Who can join

Adults 18 to 39, any sex, with Quality of Life or Late Effect. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

Rationale: Adolescent and young adult (AYA) cancer survivors, diagnosed between 18-39 years, much more than children, suffer from delay in diagnosis, lack of centralization of care, age-adjusted expertise and follow-up care. The distribution of tumor types, biology, risk factors, developmental challenges and treatment regimens are different in AYAs compared to children. Therefore findings derived from childhood cancer survivors cannot be extrapolated to AYAs. Likewise, several large tumor-specific cohort studies exist that do not specifically address unique AYA age-specific issues. Globally, so far, the identification of AYA patient subgroups that might be more susceptible to poor health outcomes has not been systematically addressed. The role of sociodemographic and treatment-associated risks, external exposures (e.g. lifestyle) and host factors (e.g. genetic); or combinations of influences for impaired (age-specific) health outcomes, remains largely unknown. Understanding who is at risk and why, will support the development of evidence-based AYA prevention, treatment and supportive care programs and guidelines. Objective: To examine the prevalence, risk factors and mechanisms of impaired health outcomes (health-related quality of life and late effects) among a population-based sample of AYA cancer survivors. Study design: Retrospective, population-based, observational cohort study. Study population: AYA cancer survivors, diagnosed at age 18-39 years between 1999-2015, identified from the Netherlands Cancer Registry (NCR), and alive 5-20 year after diagnosis Main study parameters/endpoints: Health-related quality of life; late effects

Publications & conference data

8 peer-reviewed publications reference this trial (live from Europe PMC):

  1. Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study.
    Vlooswijk C, Poll-Franse LVV, Janssen SHM, Derksen E, et al · · 2022 · cited 30× · PMID 36005166 · DOI 10.3390/curroncol29080428
  2. A Negative Body Image among Adolescent and Young Adult (AYA) Cancer Survivors: Results from the Population-Based SURVAYA Study.
    Saris LMH, Vlooswijk C, Kaal SEJ, Nuver J, et al · · 2022 · cited 22× · PMID 36358662 · DOI 10.3390/cancers14215243
  3. Health-related conditions among long-term cancer survivors diagnosed in adolescence and young adulthood (AYA): results of the SURVAYA study.
    Janssen SHM, Vlooswijk C, Bijlsma RM, Kaal SEJ, et al · · 2025 · cited 5× · PMID 38740702 · DOI 10.1007/s11764-024-01597-0
  4. 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.
    Janssen SHM, Vlooswijk C, Bijlsma RM, Kaal SEJ, et al · · 2025 · cited 4× · PMID 40528140 · DOI 10.1007/s11764-025-01818-0
  5. Pre-treatment fertility preservation and post-treatment reproduction in long-term survivors of adolescent and young adult (AYA) cancer.
    Lehmann V, Vlooswijk C, van der Graaf WTA, Bijlsma R, et al · · 2025 · cited 4× · PMID 38316726 · DOI 10.1007/s11764-024-01538-x
  6. Adherence to the World Cancer Research Fund/American Institute for Cancer Research recommendations for cancer prevention in adolescent and young adult (AYA) cancer survivors: results from the SURVAYA study.
    Gavioli C, Vlooswijk C, Janssen SHM, Kaal SEJ, et al · · 2025 · cited 3× · PMID 38224397 · DOI 10.1007/s11764-023-01529-4
  7. Exploring the interconnectedness between health-related quality of life factors among long-term adolescent and young adult cancer survivors (AYAs): a network analysis.
    Bootsma TI, van de Wal D, Vlooswijk C, Roos DC, et al · · 2024 · cited 3× · PMID 38217712 · DOI 10.1007/s00520-023-08295-0
  8. Long-term health-related quality of life among adolescent and young adult breast cancer survivors.
    Vrancken Peeters NJMC, Kerklaan R, Vlooswijk C, Bijlsma RM, et al · · 2025 · cited 1× · PMID 39982594 · DOI 10.1007/s11136-025-03914-1

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