Learning from long‐term adolescent and young adult ( AYA ) cancer survivors regarding their age‐specific care needs to improve current AYA care programs
Open accessAbstract
Background: Despite growing (inter)national awareness and appreciation, age‐specific care is still not always self‐evident and accepted as standard of care for adolescent and young adult (AYA) cancer patients. It is unknown whether long‐term AYA cancer survivors have missed age‐specific care, and if so, which survivors missed it and regarding which topics. Methods: The Netherlands Cancer Registry (NCR) identified all long‐term AYA cancer survivors (aged 18–39 years at initial cancer diagnosis, 5–20 years past diagnosis) in the Netherlands, who were invited to participate in a population‐based, observational, cross‐sectional questionnaire study (SURVAYA study), including questions on care needs. Results: In total, 3.989 AYAs participated (35.3% response rate). One‐third of them had a need for age‐specific care (33.5%), 41.2% had no need and 25.3% did not know whether they had a need. Those who had a need for age‐specific care were significantly more often female, higher educated, diagnosed at a younger age, and treated with chemotherapy, radiotherapy or hormone therapy. Most frequent topics were disease and treatment (29.7%), emotions (24.1%), friends (22.6%), family and children (15.6%), fertility and pregnancy (14.8%), work and reintegration (10.5%), care not tailored (13.8%), and overarching care and life (27.7%). Palliative care (0.0%), spirituality (0.2%), death (0.7%), complementary care (0.7%), and late effects (1.3%) were mentioned least. Conclusions: A substantial proportion of long‐term AYA cancer survivors showed a need for age‐specific care, varying by sociodemographic and clinical factors, on a wide variety of topics, which could be targeted to improve current AYA care services.
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YA have limited opportunities to connect with other YA with cancer following diagnosis and often feel as though their peers, family, and members of their community do not understand what it is like to be a young person who has had cancer.
“Our work [33] and the work of others [53, 54, 85] suggest that YA have limited opportunities to connect with other YA with cancer following diagnosis and often feel as though their peers, family, and members of their community do not understand what it is like to be a young person who has had cancer.”
From Improving symptom management for survivors of young adult cancer: rationale and study protocol for a pilot randomized controlled trial (2024) · cites this paper as [53]
The Results section reports a need for contact with peers who have cancer, difficulty staying connected to healthy peers, and that some survivors feel misunderstood by their surroundings. A survivor also describes wanting group contact about six months after diagnosis. The paper does not establish that opportunities to connect are generally limited or that survivors often feel misunderstood by each of the named groups—peers, family, and community members. (LLM, conf=0.84)
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References 43 · Cited by 51
Research works printed but not linked: 1
- [6]Adolescent Young Adult Oncology Progress Review Group. Closing the gap: research and care imperatives for adolescents and young adults with cancer. 2006.
- Authors
- Janssen, S. H. M., Vlooswijk, C., Manten‐Horst, E., Sleeman, S. H. E., Bijlsma, R. M., Kaal, S. E. J., Kerst, J. M., Tromp, J. M., Bos, M. E. M. M., van der Hulle, T., Lalisang, R. I., Nuver, J., Kouwenhoven, M. C. M., van der Graaf, W. T. A., & Husson, O.
- Affiliations
- The Netherlands Cancer Institute (NL)
- Netherlands Comprehensive Cancer Organisation (NL)
- Dutch AYA ‘Young & Cancer’ Care Network Utrecht The Netherlands
- University Medical Center Utrecht (NL)
- Radboud University Medical Center (NL)
- Amsterdam University Medical Centers (NL)
- Erasmus MC (NL)
- Department of Medical Oncology Leiden University Medical Center Leiden The Netherlands
- Maastricht University Medical Centre (NL)
- University Medical Center Groningen (NL)
- Department of Medical Oncology Netherlands Cancer Institute – Antoni van Leeuwenhoek Amsterdam The Netherlands
- Corresponding author
- Husson, Olga
- ORCID
- Venue
- Cancer Medicine
- Publisher
- Wiley
- Published
- 2023-04-29
- Volume
- 12
- Issue
- 12
- Pages
- 13712-13731
- ISSN
- 2045-7634 (ISSN-L)
- PMC
- PMC10315822
- OpenAlex
- W4367369441
- Cited by
- 51
- References
- 43
- Citations by year
- 2026: 11 · 2025: 15 · 2024: 21 · 2023: 4
- FWCI
- 18.71
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Cancer Medicine (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Research Publications (Maastricht University) (publishedVersion, cc-by)
- Amsterdam UMC (VU Amsterdam) - Institutional Repository (publishedVersion, other-oa)
- EUR Research Repository (Erasmus University Rotterdam) (publishedVersion, cc-by)
- Radboud Repository (Radboud University) (submittedVersion)
- Leiden Repository (Leiden University) (submittedVersion, cc-by)
- EUR Research Repository (Erasmus University Rotterdam) (submittedVersion, other-oa)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Utrecht University Repository (Utrecht University) (submittedVersion, other-oa)
- Pure Amsterdam UMC (submittedVersion, other-oa)
- University of Groningen research database (University of Groningen / Centre for Information Technology) (submittedVersion, cc-by)
- Data Archiving and Networked Services (DANS) (submittedVersion, other-oa)
- Funders
- KWF Kankerbestrijding (11788)
- Ministerie van Volksgezondheid, Welzijn en Sport
- Nederlandse Organisatie voor Wetenschappelijk Onderzoek (480‐08‐009)
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Keywords
- adolescent and young adult cancer survivors, long-term cancer survivors, care needs, survivorship care, work reintegration, emotional support, sociodemographic factors
- MeSH terms
- Cancer Survivors, Adolescent, Adult, Age Factors, Cross-Sectional Studies, Female, Humans, Male, Neoplasms, Survivors, Young Adult
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