School of Nursing, The Hong Kong Polytechnic University, Hung Hom, Hong Kong.
College of Nursing and Midwifery Brisbane Centre, Charles Darwin University, Brisbane, Australia.
Support Care Cancer. 2021 Mar;29(3):1683-1698. doi: 10.1007/s00520-020-05657-w. Epub 2020 Aug 10.
To examine palliative care needs of advanced cancer patients and their informal caregivers and correlates of their needs within Chinese context.
This was a cross-sectional survey conducted in two study sites in Mainland China. Patients and caregivers were recruited in dyads. Patients completed the following questionnaires: Problems and Needs in Palliative Care-short version, Hospital Anxiety and Depression Scale (HADS), Edmonton Symptom Assessment Scale (ESAS), Medical Outcomes Study-Social Support Survey (MOS-SSS), Brief Coping Orientation to Problems Experienced Scale (Brief-COPE), and Quality-of-Life Questionnaire Core 15-Palliative Care Scale. Questionnaires for caregivers were as follows: Comprehensive Needs Assessment Tool in Cancer for Caregivers, HADS, ESAS, MOS-SSS, Brief-COPE, and Caregiver Quality of Life Index-Cancer. All of the outcome variables were selected based on a conceptual framework of palliative care needs assessment.
Four hundred nineteen patient-caregiver dyads completed this survey. Patients' unmet palliative care needs were mainly related to financial (85.2%), informational (82.3%), physical (pain) (69.7%), and psychological (64.9%) domains. Caregivers' commonly reported unmet needs mainly focused on the domains of healthcare staff (95.0%), information (92.1%), and hospital facilities and services (90.5%). Patients' greater severity of symptom distress, presence of anxiety and/or depression, use of coping strategies particularly the less use of problem-focused coping, and caregivers' poorer quality of life were identified as key negative predictors of the needs of both patients and caregivers (p < 0.05).
Both patients and caregivers had context-bounded palliative care needs. In addition to increasing the amount of external asistance, more emphasis should be placed on screening for physical and psychological distress, the use of coping strategies, and the well-being of caregivers to help identify those in need for more clinical attention and specific interventions.
在中国背景下，调查晚期癌症患者及其非专业照护者的姑息治疗需求及其需求的相关性。
这是一项在中国两个研究地点进行的横断面调查。患者和照护者以二人组的形式招募。患者完成了以下问卷：姑息治疗需求简表、医院焦虑抑郁量表（HADS）、埃德蒙顿症状评估量表（ESAS）、医疗结局研究社会支持量表（MOS-SSS）、简易应对方式量表（Brief-COPE）和生活质量问卷核心 15-姑息护理量表。照护者的问卷如下：癌症照护者综合需求评估工具、HADS、ESAS、MOS-SSS、Brief-COPE 和照护者生活质量指数-癌症。所有的结果变量都是基于姑息治疗需求评估的概念框架选择的。
共有 419 对患者-照护者完成了这项调查。患者未满足的姑息治疗需求主要与经济（85.2%）、信息（82.3%）、身体（疼痛）（69.7%）和心理（64.9%）领域有关。照护者常见的未满足需求主要集中在医护人员（95.0%）、信息（92.1%）和医院设施和服务（90.5%）领域。患者症状困扰程度较重、存在焦虑和/或抑郁、使用应对策略特别是较少使用问题焦点应对策略，以及照护者生活质量较差，被确定为患者和照护者需求的关键负性预测因素（p<0.05）。
患者和照护者都有特定背景下的姑息治疗需求。除了增加外部援助的数量外，还应更加重视筛查身体和心理困扰、应对策略的使用以及照护者的幸福感，以帮助确定那些需要更多临床关注和特定干预的人。
