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

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 (e.g. fatigue, seizures) and impairments (e.g. 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 development of personalised plans to meet those needs, would be a critical step to ensure that people with LGG are best supported in living with their condition.

Understanding supported self‐management for people living with a lower‐grade glioma: Implementation considerations through the lens of normalisation process theory

“…7 People with lower-grade gliomas (LGG) have a life expectancy of 5-15 years following diagnosis, 8,9 and can experience wide-ranging symptoms and impairments (e.g., fatigue, seizures, cognitive deficits) that adversely affect health-related quality of life. 10,11 These impacts may persist long-term, particularly concerning fatigue and emotional impact. 12 Consequently, people with LGG may have prolonged, multifaceted supportive care needs; it is, therefore, important to identify how they can be supported and empowered to self-manage their condition.…”