TY - JOUR
T1 - Informational needs of brain metastases patients and their caregivers
AU - Papadakos, Janet
AU - Agarwal, Arnav
AU - Charow, Rebecca
AU - Quartey, Naa Kwarley
AU - D'Souza, Anna
AU - Giuliani, Meredith
AU - Millar, Barbara Ann
AU - Massey, Christine
AU - Shultz, David
AU - Chung, Caroline
N1 - Publisher Copyright:
© 2019 Neuro-Oncology Practice. All rights reserved.
PY - 2019/1/30
Y1 - 2019/1/30
N2 - 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.
AB - 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.
KW - Brain metastases
KW - Informational needs
KW - Patient education
KW - Supportive care needs
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U2 - 10.1093/nop/npy008
DO - 10.1093/nop/npy008
M3 - Article
C2 - 31386069
AN - SCOPUS:85062328253
SN - 2054-2577
VL - 6
SP - 47
EP - 60
JO - Neuro-Oncology Practice
JF - Neuro-Oncology Practice
IS - 1
ER -