title: Informational and Supportive Care Needs of Brain Metastases Patients and Caregivers: a Systematic Review.
abstract: While brain metastases (BM) are associated with significant morbidity and mortality, the needs of BM patients and their caregivers (CGs) remain largely unknown. The purpose of this systematic review was to summarize (a) the informational needs of BM patients and CGs, (b) their supportive care needs, and (c) studies evaluating existing programs and resources addressing one or more of informational needs. A systematic search was conducted in four databases to identify studies, published from 2000 to April 2015, discussing informational or supportive care needs of BM patients and/or their CGs. Duplicate screening, data abstraction, and risk of bias assessments were conducted. Results were qualitatively summarized. From 973 references, seven studies fulfilled inclusion criteria. While physical and medical informational needs concerning prognosis, symptom management, treatment options, and side effects were reported, no studies exploring patient or CG social, emotional, or spiritual informational needs were identified. Discordance was observed between patient, CG, and health care professional perspectives on patient supportive care needs. One study evaluated an intervention addressing informational needs. Patients required information on prognosis, managing symptoms, and available treatment options and associated side effects. They needed support managing housework, pain, and fatigue. The findings of this study suggest an ongoing need to elicit psychosocial informational needs, supportive care needs, and a need for patient- and CG-centered resource development. Since ascertaining these needs is vital to the delivery of patient-centered care, efforts must be undertaken to explore these in the context of BM patients and CGs.
authors.affiliation: Patient and Family Education Program, Princess Margaret Cancer Centre, Toronto, ON, Canada.|Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
authors.forename: Talha
authors.initials: T
authors.lastname: Maqbool
authors.affiliation: Patient and Family Education Program, Princess Margaret Cancer Centre, Toronto, ON, Canada.|Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
authors.forename: Arnav
authors.initials: A
authors.lastname: Agarwal
authors.affiliation: Patient and Family Education Program, Princess Margaret Cancer Centre, Toronto, ON, Canada.
authors.forename: Aman
authors.initials: A
authors.lastname: Sium
authors.affiliation: Patient and Family Education Program, Princess Margaret Cancer Centre, Toronto, ON, Canada.
authors.forename: Aileen
authors.initials: A
authors.lastname: Trang
authors.affiliation: Radiation Medicine Program, Princess Margaret Cancer Centre, Toronto, ON, Canada.
authors.forename: Caroline
authors.initials: C
authors.lastname: Chung
authors.affiliation: Patient and Family Education Program, Princess Margaret Cancer Centre, Toronto, ON, Canada. Janet.Papadakos@uhn.ca.|ELLICSR: Health, Wellness & Cancer Survivorship Centre, Princess Margaret Cancer Centre, Toronto, ON, Canada. Janet.Papadakos@uhn.ca.
authors.forename: Janet
authors.initials: J
authors.lastname: Papadakos
mesh_terms: D001932:Brain Neoplasms / Q000556:secondary*; D017028:Caregivers / Q000193:education / Q000523:psychology; D006801:Humans; D010353:Patient Education as Topic; D018802:Patient-Centered Care; D011379:Prognosis
keywords: Brain metastases; Cancer; Caregivers; Informational needs; Neoplasms; Patients; Supportive care needs