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Treatment-related side effects from paediatric medulloblastoma treatment are associated with a negative impact on survivors’ health-related quality of life (HR-QOL). Multiple factors are related to complications from treatment, including post-operative problems and radiation-induced side effects. The purpose of this study was to review the existing research to understand the impact of late effects of treatment on the HR-QOL for long-term survivors of childhood medulloblastoma.  

Systematic searches of the databases CINAHL, EMBASE, PsycINFO, PubMed, Web of Sciences and MEDLINE were completed. Eligible studies included participants who completed radiation therapy or proton therapy for medulloblastoma and were at least five years post-treatment when participating in the study. Six studies published between 1998 and 2018 reported the HR-QOL outcomes of young medulloblastoma survivors following radiation therapy treatment met inclusion criteria. This review was conducted by referencing the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) checklist, flow diagram, and a Population, Exposure and Outcome (PICOS) design framework.  

All studies included were retrospective in design. Five were cohort studies, and one was a case series. The number of participants across the studies ranged from 16 to 222. The HR-QOL assessments were conducted in several ways, (N=4) used self-administration questionnaires, and (N=2) studies used direct evaluation in health centres or by telephone by a trained professional The quality-of-life assessments used in the six included studies comprised of the PedsQL, HUI3, HUI2/3, Farrans and Powers Quality of Life Index, IQ, education level, and social outcomes to report on their impact on long-term quality of life. Treatment-related outcomes significantly impacted HR-QOL in childhood medulloblastoma survivors in the studies. HRQOL was worse among those who suffered post-operative complications. Neurocognitive sequelae had the most significant impact on participating in activities of daily living.

There was a lack of consistency in HR-QOL assessments, which reduced the ability to gather a reliable body of evidence to guide further QOL research and development. Clinical trial designs in the future should include standardised assessment tools to assess HR-QOL outcomes so that future developments of support after treatment can be implemented into health policy to meet the needs of medulloblastoma survivors toward living well and beyond cancer.