Informational needs of brain metastases patients and their caregivers

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.

Examining the development of information needs assessment tools for use in the cancer context: A scoping and critical review

“…The remaining tools were designed to assess information regarding specific challenges that patients face including related to brain metastases (Papadakos et al 2019), chemotherapy (van Weert et al 2009), radiotherapy (Halkett and Kristjanson 2007Zeguers et al 2012), and online information needs (Maddock et al 2011).…”

Quality of Life and Role of Palliative and Supportive Care for Patients With Brain Metastases and Caregivers: A Review

“…Support for declining physical and motor functioning, including services from physical therapists or physical medicine and rehabilitation physicians (54)(55)(56)(57)61) Early consultation of psychiatric and psychological support services for both the patient and caregivers (39,53,61,62,71) Ability to stay connected to social networks to preserve emotional wellbeing (61,69) Frequent information sharing with caregivers, especially around expectations on physical and medical matters (65,69,70) Careful and frequent medication review to limit side effects, with special attention to dexamethasone (53,60,61) surgical candidacy and patient selection on the neurosurgeons' part, as the inclusion criteria for this study involved KPS > 60, isolated or up to three metastatic intracranial lesions, and, notably, controlled primary disease. There was no postoperative KPS reported.…”

“…Caregivers and patients prioritized information related to physical and medical matters (e.g., side effects, symptoms, headache management, seizure management). They preferred to receive this information via one-on-one counseling and pamphlets ( 65 ).…”

Religious/spiritual concerns of patients with brain cancer and their caregivers

“…Up to 70% of neuro-oncology patients describe R/S as helpful during their disease experience (16,17). Compared to those with higher levels of education, patients and caregivers with lower education ranked R/S needs more highly (18). For some neuro-oncology patients R/S can intensify over the course of their disease (19)(20)(21) while for others it remains stable (22).…”

“…According to patients and caregivers, receiving information about how to access spiritual support services is also important. Information from a pamphlet was preferred and described as very important by a third of Canadian patients with brain metastases and their caregivers (18).…”