Janet Papadakos1,2, Arnav Agarwal1,3, Rebecca Charow1, Naa Kwarley Quartey1, Anna D'souza1, Meredith Giuliani1,3,4,5, Barbara-Ann Millar3,4,5, Christine Massey3, David Shultz3,4,5, Caroline Chung3,6. 1. Cancer Education Program, Princess Margaret Cancer Centre, Toronto, Ontario, Canada. 2. Patient Education, Cancer Care Ontario, Toronto, ON. 3. Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada. 4. Department of Radiation Oncology, Princess Margaret Cancer Centre, Toronto, Ontario, Canada. 5. Department of Radiation Oncology, University of Toronto, Toronto, ON. 6. Division of Radiation Oncology, MD Anderson Cancer Centre, Houston, Texas.
Abstract
BACKGROUND: In response to a dearth of formal health information targeted towards patients with brain metastases and their caregivers, a formal informational and supportive care needs assessment was conducted. METHODS: Brain metastases patients and caregivers who attended a clinic focused on the treatment of brain metastases at a tertiary medical center completed a self-report survey to assess informational needs across 6 domains: medical, physical, practical, social, emotional, and spiritual informational needs. Univariate and multivariate analyses of associations between variables was conducted using linear regression models. RESULTS: A total of 109 patients and 77 caregivers participated. Patients and caregivers both prioritized medical and physical informational domains, with a large focus on symptoms and side-effect profiles, significance of brain metastases locations and their implications, available treatment options and their risks and benefits, prognoses and follow-ups if treatment is completed, and end-of-life experiences and supports. One-on-one counseling was preferred by both caregivers and patients for these domains, as well as for practical informational needs; while patients preferred pamphlets to address social, emotional and spiritual informational needs, caregivers preferred one-on-one counseling for the former two domains as well. CONCLUSIONS: Brain metastases patients and their caregivers prioritize medical and physical informational needs, with one-on-one counseling and pamphlets being the most preferred modalities for information provision. Further exploration regarding existing non-validated resources and the development of tailored resources to address the unique needs of these patient and caregiver populations are warranted.
BACKGROUND: In response to a dearth of formal health information targeted towards patients with brain metastases and their caregivers, a formal informational and supportive care needs assessment was conducted. METHODS: Brain metastases patients and caregivers who attended a clinic focused on the treatment of brain metastases at a tertiary medical center completed a self-report survey to assess informational needs across 6 domains: medical, physical, practical, social, emotional, and spiritual informational needs. Univariate and multivariate analyses of associations between variables was conducted using linear regression models. RESULTS: A total of 109 patients and 77 caregivers participated. Patients and caregivers both prioritized medical and physical informational domains, with a large focus on symptoms and side-effect profiles, significance of brain metastases locations and their implications, available treatment options and their risks and benefits, prognoses and follow-ups if treatment is completed, and end-of-life experiences and supports. One-on-one counseling was preferred by both caregivers and patients for these domains, as well as for practical informational needs; while patients preferred pamphlets to address social, emotional and spiritual informational needs, caregivers preferred one-on-one counseling for the former two domains as well. CONCLUSIONS: Brain metastases patients and their caregivers prioritize medical and physical informational needs, with one-on-one counseling and pamphlets being the most preferred modalities for information provision. Further exploration regarding existing non-validated resources and the development of tailored resources to address the unique needs of these patient and caregiver populations are warranted.
Entities:
Keywords:
Brain metastases; informational needs; patient education; supportive care needs
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