Papadakos Janet, Agarwal Arnav, Charow Rebecca, Quartey Naa Kwarley, D'souza Anna, Giuliani Meredith, Millar Barbara-Ann, Massey Christine, Shultz David, Chung Caroline
Cancer Education Program, Princess Margaret Cancer Centre, Toronto, Ontario, Canada.
Patient Education, Cancer Care Ontario, Toronto, ON.
Neurooncol Pract. 2019 Jan;6(1):47-60. doi: 10.1093/nop/npy008. Epub 2018 Apr 20.
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.
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.
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.
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.
鉴于针对脑转移瘤患者及其护理人员的正规健康信息匮乏，开展了一项正规的信息和支持性护理需求评估。
在一家三级医疗中心，参加专注于脑转移瘤治疗门诊的脑转移瘤患者及其护理人员完成了一项自我报告调查，以评估6个领域的信息需求：医疗、身体、实际、社会、情感和精神信息需求。使用线性回归模型对变量之间的关联进行单变量和多变量分析。
共有109名患者和77名护理人员参与。患者和护理人员都将医疗和身体信息领域列为优先事项，重点关注症状和副作用情况、脑转移瘤位置的重要性及其影响、可用的治疗选择及其风险和益处、治疗完成后的预后和随访，以及临终体验和支持。护理人员和患者在这些领域以及实际信息需求方面都更喜欢一对一咨询；虽然患者更喜欢宣传册来满足社会、情感和精神信息需求，但护理人员在前面两个领域也更喜欢一对一咨询。
脑转移瘤患者及其护理人员将医疗和身体信息需求列为优先事项，一对一咨询和宣传册是最受欢迎的信息提供方式。有必要进一步探索现有的未经验证的资源，并开发量身定制的资源，以满足这些患者和护理人员群体的独特需求。
