Observational studyCancer medicine2023
Learning from long-term adolescent and young adult (AYA) cancer survivors regarding their age-specific care needs to improve current AYA care programs.
Observational study in Cancer medicine, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 1 of them a synthesis that pooled it.
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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.
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Who cites it
29 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic review of health-related quality of life outcomes in psychosocial intervention trials for adolescent and young adult cancer survivors.Critical reviews in oncology/hematology · 2023Pooled it
- Supportive care needs, decision-making participation attitudes, and quality of life in young and middle-aged Chinese patients with cancer: A latent profile and mediation analysis.Asia-Pacific journal of oncology nursing · 2026Article
- End User Needs and Perspectives for a Digital Opioid Safety Tool in Adolescents and Young Adults With Inflammatory Bowel Disease: A Qualitative Human-Centered Design Study.JMIR formative research · 2026Article
- Relations in young adults with cancer: acknowledging partners and friends as caregivers-a Danish national study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- A qualitative study of age-specific care needs in patients with early-onset advanced colorectal cancer.PEC innovation · 2026Article
- Incidence, mortality, and cumulative risk of cancer in adolescents and young adults in Switzerland.European journal of epidemiology · 2026Article
- Identifying the informational needs and sources of support of Adolescent and Young Adult (AYA) cancer survivors to inform the development of a digital platform.Journal of cancer survivorship : research and practice · 2026Article
- A scoping review on information and support needs regarding cancer and work: part I - cancer survivors.Journal of cancer survivorship : research and practice · 2026Review
- Experience in the approach to adolescents with cancer in a multidisciplinary unit. Growing together.European journal of pediatrics · 2026Article
- Article
- Health-related conditions among long-term cancer survivors diagnosed in adolescence and young adulthood (AYA): results of the SURVAYA study.Journal of cancer survivorship : research and practice · 2025Observational
- Mental health service utilization in publicly insured survivors of childhood cancer: a claims-based analysis.JNCI cancer spectrum · 2025Article
- Socioeconomic impact among and socioeconomic support services for adolescents and young adults with cancer: A European perspective.International journal of cancer · 2025Article
- 'What Really Goes on in My Cancer Bubble, They Cannot Understand': Social Functioning Among Adolescent and Young Adult (AYA) Cancer Patients.Current oncology (Toronto, Ont.) · 2025Article
- 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.Journal of cancer survivorship : research and practice · 2025Article
- Frailty and comorbidities among young adult cancer survivors enrolled in an mHealth physical activity intervention trial.Journal of cancer survivorship : research and practice · 2025Article
- Patient-Centered Care for Adolescents and Young Adults with an Uncertain or Poor Cancer Prognosis: A Secondary Analysis of What Is Needed According to Patients, Caregivers, and Healthcare Providers.Current oncology (Toronto, Ont.) · 2025Article
- Article
- Mental Health Consequences of Opioid Pain Medication Use Behaviors and Motives Among Adolescents and Young Adults With Cancer: Results From a National Survey.Psycho-oncology · 2025Article
- Article
Corrections and comments
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Authors and funding
15 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundDespite 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.
methodsThe 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.
resultsIn 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.
conclusionsA 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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