ArticleSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2022
Long-term unmet supportive care needs of teenage and young adult (TYA) childhood brain tumour survivors and their caregivers: a cross-sectional survey.
Article in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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Who cites it
15 citing papers in PubMed, 21 citations in OpenAlex.
- A longitudinal study of supportive care needs among Chinese parents of children with acute lymphoblastic leukemia.Asia-Pacific journal of oncology nursing · 2026Article
- Exploring the use of a youth specific screening tool in hematological cancer care: perspectives from young adult patients and healthcare professionals.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- An evaluation of the impact of a cancer support specialist service on families of children with cancer and the multidisciplinary team in a children's health service in Ireland.Journal of child health care : for professionals working with children in the hospital and community · 2026Article
- Comprehensive care needs among informal cancer caregivers of patients with advanced cancer in palliative care: a cross-sectional study.Scientific reports · 2025Article
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- Perioperative symptom cluster characteristics and supportive care needs of sellar tumor patients: a cross-sectional study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Observational
- Adverse health outcomes and health-related quality of life (HRQoL) among long-term adolescent and young adult (AYA) brain tumour survivors: results from the population-based SURVAYA study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- The challenges experienced by collegiate athlete cancer survivors.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- Inequalities in access to neuro-oncology supportive care and rehabilitation: A survey of healthcare professionals' perspectives.Neuro-oncology practice · 2024Article
- Unmet needs in people with high-grade glioma: defining criteria for stepped care intervention.JNCI cancer spectrum · 2024Article
- The development and validation of a needs assessment tool for use with YOUng adult survivors of a CentrAl Nervous system tumor (YOU-CAN).Neuro-oncology practice · 2024Article
- Lived experiences with unmet supportive care needs in pediatric cancer: Perspective of Chinese children and their parents.International journal of nursing sciences · 2022Article
- Review
- Long-term unmet supportive care needs of teenage and young adult (TYA) childhood brain tumour survivors and their caregivers: a cross-sectional survey.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2022Article
- Challenges and needs among pediatric oncology providers in caring for pediatric brain tumor patients and survivors: A qualitative study.International journal of clinical and health psychology : IJCHPArticle
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Authors and funding
7 authors at 3 institutions in 1 country.
Funding
Abstract
introductionThe supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).
methodsParticipants were recruited from long-term follow-up clinics (in three NHS Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13-30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short Form and caregivers the SCNS-Partners & Caregivers, alongside validated QoL questionnaires (Peds-FACT-Br and CQOLC).
resultsIn total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (± 8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (± 12.3) unmet needs. Again, the greatest number of unmet needs was observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers.
conclusionThis research provides leads to improving supportive care and long-term follow-up services. Psychological support represents the biggest gap in care. Understanding unmet needs and recognising what services are required are critical to improving quality of long-term survival.
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