QOL-15. Optimizing Neuro-Oncology Survivorship Interventions: A Qualitative Study
Abstract BACKGROUND Individuals with isocitrate dehydrogenase mutant glioma (IDHmBT) experience neurological disabilities caused by brain tumors and associated treatments. In qualitative studies, patients described a lack of confidence in managing their symptoms after diagnosis and treatment. Unfortunately, limited interventions exist to address this lack of confidence and symptom burden. Furthermore, little is known about the optimal timing and educational content needed to support patients as they transition from active treatment into surveillance. Here, we present data from qualitative interviews with patients and carepartners to refine our novel neuro-oncology survivorship curriculum, Symptom management Education to Living Fully (SELF), a 5-30 minute educational program that includes skill building on monitoring symptoms, understanding brain tumor and brain injury, and promoting healthy behaviors for overall brain health. MATERIAL AND METHODS Semi-structured interviews were conducted virtually with patients diagnosed with IDHmBTs and their carepartners individually or together per patient preference. A PowerPoint slide outlining the educational content of each session was used to guide the interview. Analysis in-progress. Deductive coding will be used to analyze the interviews by two scientists with qualitative methodology expertise. RESULTS Interviews from patients (n=8) and carepartners (n=6) described the different “phases” of being diagnosed, on active treatment, and on surveillance alone. Patients recommended initiating survivorship programs upon the stability of their symptoms (~ 6 months to 2 years after diagnosis) or completion of active treatment. Patients and carepartners recommended keeping sessions to 20-30 minutes to avoid overwhelming them. Most patient participants (n=5) preferred 1-1 survivorship programs. Carepartners (n=3) recommended including content on maintaining marriage/relationship. CONCLUSION Neuro-oncology survivorship interventions can facilitate the transition from active treatment to imaging surveillance alone as they navigate survivorship with neurological disabilities. SELF intervention has the potential to increase self-efficacy in managing their symptoms and promote healthy behaviors for overall brain health. The SELF curriculum will be modified to incorporate the feedback from patients and carepartners before conducting a pilot/feasibility trial.
Authors
- Eric Jessen Chow (ORCID: https://orcid.org/0000-0001-7712-961X)
- Shannon Fogh
- Wonkyung Jung (ORCID: https://orcid.org/0000-0002-2778-8710)
- Jerome Graber (ORCID: https://orcid.org/0000-0001-5357-2932)
- A Appleby (ORCID: https://orcid.org/0000-0001-9992-7153)
- Sara Hardy (ORCID: https://orcid.org/0000-0002-8361-1688)
- Adam B. Smith (ORCID: https://orcid.org/0000-0002-5750-7772)
- Katie Sofie
- M Pacheco (ORCID: https://orcid.org/0000-0002-8113-7695)
- Frances Marcus Lewis (ORCID: https://orcid.org/0000-0002-8288-4983)
- Jean C. Yi (ORCID: https://orcid.org/0000-0003-4589-7272)
- Lynne P. Taylor (ORCID: https://orcid.org/0000-0001-5946-3796)
- Lia M. Halasz (ORCID: https://orcid.org/0000-0001-9581-4901)
- David P. Sheppard (ORCID: https://orcid.org/0000-0001-8969-9783)
- Karl Cristie Figuracion (ORCID: https://orcid.org/0000-0003-1360-5749)
- Catherine Duggan (ORCID: https://orcid.org/0000-0001-7369-4021)
- Heather Greenlee (ORCID: https://orcid.org/0000-0003-4148-1405)
- K D Johnson
- Heidi Donovan
Institutions
- Boston College (US)
- University of Washington (US)
- Fred Hutch Cancer Center (US)
- Seattle University (US)
Publication Details
- Journal
- Neuro-Oncology
- Published
- 2025-11-01
- DOI
- https://doi.org/10.1093/neuonc/noaf201.1516
- Primary Topic
- Glioma Diagnosis and Treatment
- Type
- article
- Field-Weighted Citation Impact
- 0.00