Abstract
Brain and central nervous system tumours are the most common solid tumour across 153 cancer registries world-wide for those aged 0-19 years1. They account for 15% of adolescent and young adult (AYA) cancers aged 15-25 years.2 AYAs aged 15 to 39 have the highest rates of survival following a brain tumour, which when combined with the incidence rate in this age group, indicates this population has the largest proportion of survivors predisposed to late effects. More than half of survivors of a brain tumour have ongoing symptoms that can have a detrimental impact on an individuals’ ability to attain common milestones reached during adolescence.3 Failure to achieve these milestones highlights the susceptible nature of adolescence and the vulnerability of those severely affected by their diagnosis and treatment. Lower rates of marriage and employment, social isolation and limits on reaching independence are a consequence of late effects from disease and treatment.3-6
The aim of support for cancer survivors is to maximize quality of life by aiding a return to normality and independence as soon as possible while minimizing the negative effects associated with cancer and its treatment.7 Recommendations for follow-up services advocate and incentivize implementation of personalized packages of follow-up care comprising of: well-being events aimed to support self-management of symptoms; rapid access to a cancer centre when necessary; completion of holistic needs assessments; and access to health and wellbeing information.8 In addition, survivors of a brain tumour should be made aware that lifestyle choices may impact on the severity and management of late effects. Therefore, follow-up services need to acknowledge typical behavior traits displayed in this age group: immature decision making and not placing emphasis on the long-term consequences of decisions.9 A better understanding of all aspects of the survivorship experience of AYAs is required to ensure follow-up services are able to meet the needs of this population.
Systematic reviews examining quality of life and experiences of brain tumour survivors mainly focus on adult10-11 or paediatric populations.12-13 This meta-ethnography aims to add to existing knowledge by aggregating qualitative data and interpretively synthesizing this to generate new concepts regarding all aspects of the survivorship experience. In order to identify areas of unmet need for young people aged 15 to 39 years, the focus of this review is on quality of life, family functioning, experiences of physical and cognitive late effects and social functioning, including the perspectives of parents, partners and caregivers.