ID #59 Life After Paediatric Low-Grade Glioma: The Utility Of Survivor Narratives In Paediatric Low-Grade Glioma Outcome Research
Katie Green, Deborah Ridout, Kim Phipps, Deirdre Leyden, Kristian Aquilina, Richard Bowman, Jenny Gains, Thomas Jacques, Richard Langner, Darren Hargrave, Myra Bluebond-LangnerAbstract
Background
Paediatric Low-Grade Glioma (PLGG) is a generally survivable Paediatric CNS tumour, though enduring functional and quality of life (QOL) impairments often occur. To datePLGG outcome research has relied on quantitative scales, such as PedsQl and has not included survivor’s 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 five 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 includingmedical 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 median age 21yrs (18-25 years); at median duration from diagnosis 12 years (9-18 years) completed interviews. OESSIs 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 warrants further exploration of the value of survivors’ narrative accounts in outcome research and in informing clinical practice.