“It changes everything”: Understanding how people experience the impact of living with a lower-grade glioma Article Swipe
Ben Rimmer
,
Michelle Balla
,
Lizzie Dutton
,
Sophie Williams
,
Joanne Lewis
,
Pamela Gallagher
,
Tracy Finch
,
Richéal Burns
,
Vera Araújo‐Soares
,
Fiona Menger
,
Linda Sharp
,
Sara Erridge
,
Pauline Sturdy
,
Catherine McBain
·
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.1093/nop/npae006
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.1093/nop/npae006
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.
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Metadata
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- en
- Landing Page
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- https://academic.oup.com/nop/advance-article-pdf/doi/10.1093/nop/npae006/56448969/npae006.pdf
- OA Status
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- Cited By
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- References
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- Related Works
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- OpenAlex ID
- https://openalex.org/W4391308927
All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
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https://openalex.org/W4391308927Canonical identifier for this work in OpenAlex
- DOI
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https://doi.org/10.1093/nop/npae006Digital Object Identifier
- Title
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“It changes everything”: Understanding how people experience the impact of living with a lower-grade gliomaWork title
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articleOpenAlex work type
- Language
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enPrimary language
- Publication year
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2024Year of publication
- Publication date
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2024-01-29Full publication date if available
- Authors
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Ben Rimmer, Michelle Balla, Lizzie Dutton, Sophie Williams, Joanne Lewis, Pamela Gallagher, Tracy Finch, Richéal Burns, Vera Araújo‐Soares, Fiona Menger, Linda Sharp, Sara Erridge, Pauline Sturdy, Catherine McBainList of authors in order
- Landing page
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https://doi.org/10.1093/nop/npae006Publisher landing page
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https://academic.oup.com/nop/advance-article-pdf/doi/10.1093/nop/npae006/56448969/npae006.pdfDirect link to full text PDF
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YesWhether a free full text is available
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hybridOpen access status per OpenAlex
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https://academic.oup.com/nop/advance-article-pdf/doi/10.1093/nop/npae006/56448969/npae006.pdfDirect OA link when available
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Glioma, Psychology, Internet privacy, Computer science, Medicine, Cancer researchTop concepts (fields/topics) attached by OpenAlex
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19Total citation count in OpenAlex
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2025: 10, 2024: 9Per-year citation counts (last 5 years)
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10Other works algorithmically related by OpenAlex
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