QOL-12. "I'M JUST LIKE A BASKET FULL OF PROBLEMS": QUALITATIVE STUDY OF COGNITIVE DYSFUNCTION AND QUALITY OF LIFE IN GLIOMA SURVIVORS. (14th November 2022)

• Record Type: Journal Article
• Authors: Van Dyk, Kathleen; Wall, Lucy; Ellingson, Benjamin; An, Nicholas; Lai, Albert; Cloughesy, Timothy; Brauer, Eden R; Nghiemphu, Phioanh L
• Is Part Of: Neuro-oncology. Volume 24(2022)Supplement 7
• Page Start: vii243
• Page End: vii243
• Publication Date: 2022-11-14
• Subjects: Brain Neoplasms -- Periodicals; Brain -- Tumors -- Periodicals; Brain -- Cancer -- Periodicals; Nervous system -- Cancer -- Periodicals; 616.99481
• DOI: 10.1093/neuonc/noac209.939
• Languages: English
• ISSNs: 1522-8517

Abstract

Abstract: For glioma survivors, cognitive impairment can be a central determinant of quality of life, but we need better understanding of their unique challenges and supportive care needs. In this qualitative study, we aimed to explore the post-treatment experiences of cognitive and functional challenges and their impact on quality of life from the perspectives of glioma survivors. Glioma survivors in an observational study were invited to participate in an in-depth qualitative interview. Using a semi-structured interview guide, interviews were audio-recorded and transcribed verbatim. Data were analyzed using a reflexive thematic analysis approach to develop key themes to inform clinical practice. Participants (n=9) ranged in age from 29 to 72 years, and were at least 4 years post-diagnosis. Under the overarching survivorship theme, three key themes were developed. The first theme, "Learning what my brain can and can't handle, " centered on functional challenges related to cognitive impairments, including difficulties at work and managing home and family responsibilities. In response, participants described generating their own strategies to manage cognitive limitations in daily activities. The second theme, "Such an important crossroads", reflected the significant emotional impact of persisting impairments (e.g., frustration, disappointment, reduced self-esteem, acceptance), increased anxiety around an uncertain future, and a shift in personal values towards an increased sense of gratitude, crystalizing of intentions, and focus on things of greatest importance. The final theme, "A solid foundation of people around me", referred to the necessity of social support, in both emotional and instrumental terms. Many expressed a desire for and appreciation of coping tools and support for the support people in their lives. Nearly all participants expressed interest in cognitive rehabilitation – whether or not they were experiencing significant cognitive problems. These findings have implications for clinical practice and can inform the development of effective patient-centered supportive care interventions in this population.