“It changes everything” Understanding how people experience the impact of living with a lower-grade glioma

Ben Rimmer*, Michelle Balla, Lizzie Dutton, Sophie Williams, Joanne Lewis, Pamela Gallagher, Tracy Finch, Richéal Burns, Vera Araújo-Soares, Fiona Menger, Linda Sharp, Ways Ahead Study Team

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

3 Citations (Scopus)
37 Downloads (Pure)

Abstract

Background. Quantitative studies show people living with a lower-grade glioma (LGG) often report low health-related quality of life. However, it is unclear how this impact is experienced; resulting supportive care needs are also poorly understood. We explored how people experience the impact of living long-term with an LGG, to help identify potential supportive care needs. Methods. We conducted semi-structured interviews with a diverse group of people with LGG (n = 28) across the United Kingdom, who had completed primary treatment (male n = 16, female n = 12, mean age 54.6 years, mean time since diagnosis 8.7 years). Interviews were transcribed and inductive thematic analysis was conducted. Results. Four themes relating to the impact experiences of people with LGG were generated: “Emotional response to the diagnosis,” “Living with the ‘What ifs’,” “Changing relationships,” and “Faltering independence.” These reflect participants’ experiences with symptoms (eg, fatigue, seizures) and impairments (eg, motor dysfunction, cognitive deficits), and how these, in turn, drive impacts on daily living (including on work, relationships, social activities, and transport). Participants spoke about their experiences with profound emotion throughout. Conclusions. People with LGG can experience wide-ranging everyday impacts and may have extensive supportive care needs. This study highlights how this impact is experienced and what it means to people with LGG. Best practice suggestions for conducting comprehensive needs assessments tailored to those with LGG, and the development of personalized plans to meet those needs, would be a critical step to ensure that people with LGG are best supported in living with their condition.

Original languageEnglish
Article numbernpae006
Pages (from-to)255-265
Number of pages11
JournalNeuro-Oncology Practice
Volume11
Issue number3
Early online date29 Jan 2024
DOIs
Publication statusPublished - 1 Jun 2024

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