Long-term unmet supportive care needs of teenage and young adult (TYA) childhood brain tumour survivors and their caregivers: a cross-sectional survey.

INTRODUCTION: The 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). METHODS: Participants 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). RESULTS: In 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. CONCLUSION: This 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.

Unmet support needs in teenage and young adult childhood brain tumour survivors and their caregivers: "it's all the aftermath, and then you're forgotten about".

PURPOSE: Teenage and young adult (TYA) survivors of childhood brain tumours and their family caregivers can experience many late effects of treatment that can hamper the transition to living independent lives. Yet, their long-term supportive care needs are largely unknown. We investigated the supportive care needs of TYA survivors and their caregivers and explored the role and perceived use of support. METHODS: Face-to-face semi-structured interviews were conducted with survivors aged 16-30 (n = 11) who were ≥ 5 years after diagnosis and caregivers (n = 11). Interviews were recorded and transcriptions thematically analysed. RESULTS: Four themes emerged: (1) preferences for support and support services (unmet needs). Concerns regarding mental health, employment and financial uncertainty, the desire to live independently, and lack of support were emphasised. (2) Decline in support. Caregivers noted a drop-off in support available when transitioning to adult services. (3) Reasons for not obtaining adequate support. Several barriers to accessing support were raised, including distance and aging out of services. (4) The role of long-term hospital-based follow-up care. Participants highlighted the importance of, and reassurance from, long-term follow-up care but noted a more all-inclusive approach is required. CONCLUSIONS: Even many years after diagnosis, TYA childhood brain tumour survivors and their caregivers continue to have unmet supportive care needs. Both TYA survivors and their caregivers can benefit from support to meet their unique needs and improve long-term quality of life. Understanding unmet needs and recognising what services are required due to the late effects of treatment is critical to improving long-term quality of survival.

Using qualitative and co-design methods to inform the development of an intervention to support and improve physical activity in childhood cancer survivors: a study protocol for BEing Active after ChildhOod caNcer (BEACON).

INTRODUCTION: Childhood cancer survivors (CCSs) treated with cardiotoxic cancer treatments are at increased risk of developing cardiometabolic complications. This risk is further exacerbated by poor health behaviours. In particular, CCSs are less active than non-cancer comparators. Existing interventions aiming to improve physical activity (PA) levels in CCSs are methodologically weak. The aim of this study is to rigorously and systematically develop an evidence-based and theoretically-informed intervention to promote, support, improve and sustain PA levels in CCSs, with the long-term goal of reducing CCSs' cardiovascular morbidity and mortality. METHODS AND ANALYSIS: The BEing Active after ChildhOod caNcer (BEACON) study involves two workpackages at two National Health Service sites in England, UK.Participants will be CCSs and their parents, and healthcare professionals (HCPs) involved in their care.Workpackage one (WP1) will use qualitative methods to explore and understand the barriers and facilitators to PA in CCSs. Two sets of semistructured interviews will be conducted with (1) CCSs (aged 10-24 years) and (2) parents of CCSs. WP2 will use co-design methods to bring together stakeholders (CCSs; their parents; HCPs; researchers) to develop a prototype intervention. Where possible, all data will be audio recorded and transcribed.Data from WP1 will be analysed using a thematic approach. Analysis of WP2 data will involve content analysis, and analysis of formative output and procedures. ETHICS AND DISSEMINATION: The study was approved by North East-Tyne & Wear South Research Ethics Committee (REC ref: 18/NE/0274). Research findings will be disseminated primarily via national and international conferences and publication in peer-reviewed journals. Patient and public involvement will inform further dissemination activities.