P15.13.A DESIGNING A NOVEL NEURO-ONCOLOGY SURVIVORSHIP SYMPTOM MANAGEMENT PROGRAM FOR BRAIN TUMOR SURVIVORS: DISCUSSIONS WITH CLINICAL TEAM MEMBERS, PATIENTS, AND CAREGIVERS

Abstract BACKGROUND Isocitrate dehydrogenase mutant glioma brain tumor (IDHmBT) commonly affects adults with a mean age at diagnosis of 41 years old. Advances in surgery, chemotherapy, and radiation (RT) have extended the overall median survival of IDHmBT survivors. Unfortunately, up to 75% of IDHmBT survivors experience neurological symptoms that significantly impact their overall quality of life (QoL). Nurse-led symptom management interventions to increase self-efficacy, the belief in one’s ability to cope to achieve a desired outcome, have been shown to reduce symptom burden among cancer survivors. However, these studies often excluded patients with BT. Currently, limited interventions have been developed to increase self-efficacy to reduce symptom burden and improve QoL among BT survivors. This abstract aims to present the development of our novel neuro-oncology survivorship curriculum called Symptom management Education to Living Fully (SELF). METHODS Using the National Institute of Health (NIH) Stage Model for Behavioral Intervention Development, we reviewed qualitative and quantitative studies. We collaborated with subject matter experts (neuropsychologists, nurses, neuro-oncologists, radiation oncologists, behavioral scientists, theorists) and a patient advocate, to initially inform the content of the SELF intervention (Stage 0 of the NIH Stage Model). Social Learning Theory was used to design the curriculum. In Stage Ia, we conducted an in-person focus group with clinicians to receive feedback on curriculum, content, and delivery. Virtual 1: 1 interviews with stakeholders (patients and caregivers) are underway to refine and modify the SELF curriculum. Deductive coding will be used to analyze the interviews. RESULTS The SELF intervention is a 5-30 minute patient education curriculum to be delivered virtually every 2 weeks by a nurse interventionist. Patient education includes skill building for monitoring symptoms, understanding brain tumor and brain injury, and promoting healthy behaviors for brain health. To increase accessibility, SELF will be delivered both virtually or in-person per patient preference. The focus group of clinicians (nurses [n=4], social worker [n=1], and neuropsychologist [n=1]) suggested modification to include the language to present brain injury education, integration of a survivorship care plan, and prioritizing patients at least 6 months after BT diagnosis or treatment initiation. Interviews with stakeholders are expected to conclude in July 2025. CONCLUSION To our knowledge, SELF is the only nurse-led symptom management intervention for IDHmBT survivors designed to increase self-efficacy, reduce symptom burden, and improve QoL. Symptom management interventions are necessary to support patients and their caregivers after treatment. SELF will be modified prior to conducting a pilot/feasibility trial (NIH Stage Ib).

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Journal
Neuro-Oncology
Published
2025-10-01
DOI
https://doi.org/10.1093/neuonc/noaf193.503
Primary Topic
Cancer-related cognitive impairment studies
Type
article
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article

P15.13.A DESIGNING A NOVEL NEURO-ONCOLOGY SURVIVORSHIP SYMPTOM MANAGEMENT PROGRAM FOR BRAIN TUMOR SURVIVORS: DISCUSSIONS WITH CLINICAL TEAM MEMBERS, PATIENTS, AND CAREGIVERS

Angela B. Smith, Shannon Fogh, Jerome Graber, A Appleby et al.
Neuro-Oncology
Cancer-related cognitive impairment studies
article

P15.13.A DESIGNING A NOVEL NEURO-ONCOLOGY SURVIVORSHIP SYMPTOM MANAGEMENT PROGRAM FOR BRAIN TUMOR SURVIVORS: DISCUSSIONS WITH CLINICAL TEAM MEMBERS, PATIENTS, AND CAREGIVERS

Angela B. Smith, Shannon Fogh, Jerome Graber, A Appleby, Katie Sofie, L.M. Halasz, M Pacheco, Frances Marcus Lewis, Werner Jung, Lynne P. Taylor, D P Sheppard, Steven J. Hardy, Heather Greenlee, K D Johnson, Heidi Donovan, K F Figuracion
article en

Abstract

Abstract BACKGROUND Isocitrate dehydrogenase mutant glioma brain tumor (IDHmBT) commonly affects adults with a mean age at diagnosis of 41 years old. Advances in surgery, chemotherapy, and radiation (RT) have extended the overall median survival of IDHmBT survivors. Unfortunately, up to 75% of IDHmBT survivors experience neurological symptoms that significantly impact their overall quality of life (QoL). Nurse-led symptom management interventions to increase self-efficacy, the belief in one’s ability to cope to achieve a desired outcome, have been shown to reduce symptom burden among cancer survivors. However, these studies often excluded patients with BT. Currently, limited interventions have been developed to increase self-efficacy to reduce symptom burden and improve QoL among BT survivors. This abstract aims to present the development of our novel neuro-oncology survivorship curriculum called Symptom management Education to Living Fully (SELF). METHODS Using the National Institute of Health (NIH) Stage Model for Behavioral Intervention Development, we reviewed qualitative and quantitative studies. We collaborated with subject matter experts (neuropsychologists, nurses, neuro-oncologists, radiation oncologists, behavioral scientists, theorists) and a patient advocate, to initially inform the content of the SELF intervention (Stage 0 of the NIH Stage Model). Social Learning Theory was used to design the curriculum. In Stage Ia, we conducted an in-person focus group with clinicians to receive feedback on curriculum, content, and delivery. Virtual 1: 1 interviews with stakeholders (patients and caregivers) are underway to refine and modify the SELF curriculum. Deductive coding will be used to analyze the interviews. RESULTS The SELF intervention is a 5-30 minute patient education curriculum to be delivered virtually every 2 weeks by a nurse interventionist. Patient education includes skill building for monitoring symptoms, understanding brain tumor and brain injury, and promoting healthy behaviors for brain health. To increase accessibility, SELF will be delivered both virtually or in-person per patient preference. The focus group of clinicians (nurses [n=4], social worker [n=1], and neuropsychologist [n=1]) suggested modification to include the language to present brain injury education, integration of a survivorship care plan, and prioritizing patients at least 6 months after BT diagnosis or treatment initiation. Interviews with stakeholders are expected to conclude in July 2025. CONCLUSION To our knowledge, SELF is the only nurse-led symptom management intervention for IDHmBT survivors designed to increase self-efficacy, reduce symptom burden, and improve QoL. Symptom management interventions are necessary to support patients and their caregivers after treatment. SELF will be modified prior to conducting a pilot/feasibility trial (NIH Stage Ib).

Neuro-OncologyVol. 27(Supplement_3)
Boston College (US), Cape Town HVTN Immunology Laboratory / Hutchinson Centre Research Institute of South Africa (ZA), University of Washington (US), Fred Hutch Cancer Center (US), Patient Advocate Foundation (US)
Openalex Percentile: Top 60%
Cancer-related cognitive impairment studies
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