QOL-17. REFLECTIONS ON A PSYCHOEDUCATION INTERVENTION FOR PATIENTS WITH NEWLY DIAGNOSED BRAIN TUMORS (NEUROPATHWAYS): A QUALITATIVE STUDY

Abstract BACKGROUND Patients with newly diagnosed primary malignant brain tumors (PMBT) face unique challenges processing and absorbing information regarding their diagnosis, often while contending with cognitive and communication deficits. Limited research exists regarding optimal information provision and support for this highly distressed population. We used input from clinician, patient, and caregiver stakeholders to design a population-specific, psychoeducation intervention (“NeuroPathways”) to address these needs. METHODS We conducted a single-arm study (N=12) to pilot and refine NeuroPathways in English-speaking patients within six-weeks of a PMBT diagnosis. Neuropathways comprises 1) a comprehensive (105 pages) handbook covering information about PMBT diagnosis, treatment, coping, self-care, and vetted resources, and 2) four brief, individual telehealth sessions with a trained interventionist (e.g., psychologist, physician) over 4-8 weeks to assist and empower patients to obtain information, support, and coping guidance at their preferred depth and pace, using the handbook as a resource. Ten participants completed all four sessions and participated in semi-structured exit interviews. We used rapid qualitative analysis to explore participants’ perceptions of intervention delivery, content, and benefit. RESULTS Participants (83% male, median age=52 years) uniformly described NeuroPathways as accessible, citing the telehealth format as particularly important for facilitating participation given logistical challenges related to cancer treatment. Perceived benefits of participation included: a) access to well-organized information targeting both current and future disease- and treatment-related concerns; b) increased skill in problem solving and communication with loved ones and/or medical providers; c) personalized emotional support from interventionists. While most felt the timing was appropriate, several who enrolled later in the eligibility window stated a desire for earlier intervention. CONCLUSION Participant feedback highlights the accessibility and potential benefits of this psychoeducation intervention for patients with newly diagnosed PMBT. These data will inform refinement of NeuroPathways in preparation for a pilot randomized controlled trial to formally assess feasibility and acceptability.

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Publication Details

Journal
Neuro-Oncology
Published
2024-11-01
DOI
https://doi.org/10.1093/neuonc/noae165.1052
Primary Topic
Cancer-related cognitive impairment studies
Type
article
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article

QOL-17. REFLECTIONS ON A PSYCHOEDUCATION INTERVENTION FOR PATIENTS WITH NEWLY DIAGNOSED BRAIN TUMORS (NEUROPATHWAYS): A QUALITATIVE STUDY

Sarah Louise Steele, Jennifer S. Temel, Kelcie Willis, Kenneth E. Warner et al.
Neuro-Oncology
Cancer-related cognitive impairment studies
article

QOL-17. REFLECTIONS ON A PSYCHOEDUCATION INTERVENTION FOR PATIENTS WITH NEWLY DIAGNOSED BRAIN TUMORS (NEUROPATHWAYS): A QUALITATIVE STUDY

Sarah Louise Steele, Jennifer S. Temel, Kelcie Willis, Kenneth E. Warner, Amy Maguire, Michael Parsons, Alyx Podgurski, Daniel T. Chiu, Jessica Whitman, Lara Traeger, Sumita Strander, Deborah Anne Forst, Chris Curtis, Joelle McCone
article en

Abstract

Abstract BACKGROUND Patients with newly diagnosed primary malignant brain tumors (PMBT) face unique challenges processing and absorbing information regarding their diagnosis, often while contending with cognitive and communication deficits. Limited research exists regarding optimal information provision and support for this highly distressed population. We used input from clinician, patient, and caregiver stakeholders to design a population-specific, psychoeducation intervention (“NeuroPathways”) to address these needs. METHODS We conducted a single-arm study (N=12) to pilot and refine NeuroPathways in English-speaking patients within six-weeks of a PMBT diagnosis. Neuropathways comprises 1) a comprehensive (105 pages) handbook covering information about PMBT diagnosis, treatment, coping, self-care, and vetted resources, and 2) four brief, individual telehealth sessions with a trained interventionist (e.g., psychologist, physician) over 4-8 weeks to assist and empower patients to obtain information, support, and coping guidance at their preferred depth and pace, using the handbook as a resource. Ten participants completed all four sessions and participated in semi-structured exit interviews. We used rapid qualitative analysis to explore participants’ perceptions of intervention delivery, content, and benefit. RESULTS Participants (83% male, median age=52 years) uniformly described NeuroPathways as accessible, citing the telehealth format as particularly important for facilitating participation given logistical challenges related to cancer treatment. Perceived benefits of participation included: a) access to well-organized information targeting both current and future disease- and treatment-related concerns; b) increased skill in problem solving and communication with loved ones and/or medical providers; c) personalized emotional support from interventionists. While most felt the timing was appropriate, several who enrolled later in the eligibility window stated a desire for earlier intervention. CONCLUSION Participant feedback highlights the accessibility and potential benefits of this psychoeducation intervention for patients with newly diagnosed PMBT. These data will inform refinement of NeuroPathways in preparation for a pilot randomized controlled trial to formally assess feasibility and acceptability.

Neuro-OncologyVol. 26(Supplement_8)
Harvard University (US), University of Miami (US), Massachusetts General Hospital (US)
Openalex Percentile: Top 62%
Cancer-related cognitive impairment studies
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