Life after pediatric low-grade glioma: the utility of survivor narratives in pediatric low-grade glioma outcome research

Abstract Background Pediatric low-grade glioma (PLGG) is a generally survivable Pediatric CNS tumor, though enduring functional and quality of life (QOL) impairments often occur. To date, PLGG outcome research has relied on quantitative scales, such as PedsQl and has not included survivors’ reports of their lived experiences in years post treatment. Methods We conducted open-ended semi-structured interviews (OESSIs) with adult long-term PLGG survivors greater than 5 years post treatment in the context of a larger study of prognostic modelling for PLGG. Interview transcripts were analysed using Framework Analysis (FA). Results from the larger study, including medical records, clinically measured functional outcomes (at last follow-up), PedsQl (QOL) score, and responses to the Physical, Educational and Social Assessment Tool (PESAT; a functional questionnaire) and FA results, were compared to assess concordance of the two approaches in assessing life in survival. Results Ten survivors at a median age of 21 years (18-25 years); at a median duration from diagnosis of 12 years (9-18 years) completed interviews. Open-ended semi-structured interviews identified survivors’ continuing struggle with PLGGs. Even survivors with high QOL scores worked to maintain a normal life. Interviews revealed functional deficits and problems not identified from clinical follow-up, PedsQl or PESAT questionnaires, including seizures, social relationships, employment, and mental health. Conclusions Survivors’ narratives of their lived experiences provide unique insight into the complex, long-lasting impact of PLGG post treatment. The sometimes-stark differences regarding the nature of survivorship revealed by the different approaches warrant further exploration of the value of survivors’ narrative accounts in outcome research and in informing clinical practice.