Long‐term issues and supportive care needs of adolescent and young adult childhood brain tumour survivors and their caregivers: A systematic review

Abstract

Objective Long‐term issues following diagnosis and treatment of a childhood brain tumour often become apparent as the survivor enters adolescence and young adulthood. Their caregivers may additionally face long‐term impacts on their emotional and psychological functioning. This review synthesised evidence on the issues and supportive care needs of adolescent and young adult (AYA) survivors of a brain tumour diagnosed in childhood and their caregivers. Methods Electronic databases were searched up until September 2017. All studies reporting on issues or needs of childhood brain tumour survivors (aged 14‐39) and their caregivers were included. Narrative synthesis methods were used to summarise, integrate, and interpret findings. Results Fifty‐six articles (49 studies) met the inclusion criteria. Social issues (ie, isolation and impaired daily functioning) were most commonly reported by survivors, followed by cognitive (ie, impaired memory and attention) and physical issues (ie, endocrine dysfunctions and fatigue). Survivors experienced poorer social functioning and sexual functioning and were less likely to be employed or have children, when compared with other AYA cancer survivors. Caregivers experienced reduced support as the survivor moved into young adulthood. Caregivers reported uncertainty, increased responsibilities, and problems maintaining their own self–well‐being and family relationships. Few studies reported on supportive care needs. Survivors expressed a need for better educational support and age‐specific psychosocial services. Conclusions Surviving a childhood brain tumour can be particularly challenging for AYA survivors and their caregivers. Robust structured research is needed to identify specific support needs of both survivors and their caregivers and how these can be optimally addressed.

Identification of Evidence for Key Positive Psychological Constructs in Pediatric and Adolescent/Young Adult Patients with Cancer: A Scoping Review

“…The most significant factor contributing to personal growth was the cancer experience itself (37/65, 56.9%). Some specific areas of growth mentioned were improved self-reflection, 52 clearer life purpose, 53 a positive new identity, 54 , 55 overall maturation, 56 and increased empathy. 57 Faith in God and spiritual struggles played a significant role in patient personal growth, 58 , 59 mostly by allowing patients to adapt to or comprehend their disease.…”

Measuring health‐related quality of life in adolescent and young adult cancer survivors with the National Institutes of Health Patient‐Reported Outcomes Measurement Information System®: Comparing adolescent, emerging adult, and young adult survivor perspectives

“…AYA cancer survivors report significantly lower HRQOL compared to their healthy peers in some studies, 4–6 but not all 7 . Discussions of HRQOL across the AYA survivor population have primarily focused on cancer type, 8,9 but there may be meaningful differences in HRQOL among AYA survivors diagnosed at different life stages 4,10,11 …”

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”

“…The interviews followed an interview guide (Table 1) consisting of open-ended questions, developed through a systematic review [25]. Participants were interviewed individually; however if preferred (e.g.…”

“…Long-term follow-up clinics can offer coordinated, multidisciplinary care addressing survivors' and caregivers' issues [22][23][24]. To improve services, having a clear overview of unmet supportive care needs of TYA survivors of childhood brain tumours and their caregivers is crucialyet, we found little research addressing this in our recent systematic review [25]. We aimed to describe supportive care needs of TYA childhood brain tumour survivors and their caregivers and explore the role and perceived use of support services.…”