OS5.6 Issues and needs experienced by adolescent and young adult brain tumour survivors and their caregivers: A systematic review

Abstract

BACKGROUND: Long term issues following diagnosis and treatment of a childhood brain tumour often become apparent as the survivor enters adolescence and young adulthood. These issues can spillover to the survivors' informal caregivers with emotional and psychological impacts. This systematic review aimed to identify and synthesise evidence on the issues and unmet needs of adolescent and young adult (14-39 y) survivors of a brain tumour diagnosed in childhood (0-14 y) and their caregivers. MATERIAL AND METHODS: Medline, Embase, PsycINFO, Web of Science, Pubmed, CINAHL, NICE evidence database and the Cochrane Library were searched from inception to August 2017. All studies reporting on issues or needs of brain tumour survivors (aged 14-39) and their caregivers were included. A random sample (20%) was independently screened by a second reviewer. Quality was assessed using the Mixed Methods Appraisal Tool. Narrative synthesis methods were used to summarise, integrate and interpret the findings of the articles included within the review. RESULTS: In total, 3768 unique articles were identified, of which 645 were reviewed in full text. 56 were included. Quality of articles was varied, many studies scored poorly in acceptable response rates (defined as under 60%). Social issues (isolation, relationships) were most commonly reported by survivors, followed by cognitive (attention, memory) and physical issues (appearance, fitness). Medulloblastoma survivors and those with more invasive treatment experienced more challenging issues than other subgroups. Caregivers similarly reported concerns around survivors' ability to succeed socially, academically and their current/future health. Caregivers themselves had little time and energy to maintain their own wellbeing or that of other family members. Unmet supportive care needs were less frequently reported. Survivors expressed a need for educational support and age-specific psychosocial services; including face-to-face/virtual support groups and opportunities to socialise with other survivors. Caregivers felt a loss of support as the survivor moved further away from their treatment into young adulthood. They most frequently mentioned the need for caregiver support groups, survivorship education classes, and age-matched social support groups for survivors. CONCLUSION: Surviving a childhood brain tumour can be particularly challenging for adolescent and young adult patients and their caregivers. Survivors and caregivers continue to report long-term issues and unmet needs throughout follow-up. More research is needed on the specific unmet support needs of both survivors and their caregivers and how support services can best meet these needs. This could improve quality of life in survivorship.