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.
Highlights
The supportive care needs of long-term childhood brain tumour survivors, teenagers and young adults (TYAs), and their caregivers are largely unknown
TYA childhood brain tumour survivors are often faced with tensions between their emerging abilities, and their reduced capabilities imposed by their tumour and treatments [6]
We aimed to (1) describe the unmet supportive care needs of TYA survivors of childhood brain tumours and their caregivers, (2) explore if sociodemographic/clinical data are associated with unmet needs and (3) determine whether unmet needs are associated with quality of life (QoL) outcomes
Summary
The supportive care needs of long-term childhood brain tumour survivors, teenagers and young adults (TYAs), and their caregivers are largely unknown. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13–30, and their primary caregivers. Caregivers reported on average 12.4 (± 12.3) unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. Conclusion This research provides leads to improving supportive care and long-term follow-up services. Understanding unmet needs and recognising what services are required are critical to improving quality of long-term survival. Teenage and young adult (TYA) survivors of childhood brain tumours are an ever-growing population, many of whom live with late effects as a consequence of their tumour and treatment [4, 5]. TYA childhood brain tumour survivors are often faced with tensions between their emerging abilities, and their reduced capabilities imposed by their tumour and treatments [6]
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