Aoyama Maho, Mori Masanori, Morita Tatsuya, Tsuneto Satoru, Miyashita Mitsunori
Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, 2-1 Seiryo-machi, Aoba-ku, Sendai, 980-8575, Miyagi, Japan.
Department of Nursing, Yamagata Prefectural University of Health Sciences, 260 Kamiyanagi, Yamagata, 990-2212, Yamagata, Japan.
BMC Palliat Care. 2024 Dec 3;23(1):277. doi: 10.1186/s12904-024-01600-6.
Maintaining quality of care and improving the quality of life (QOL) of patients and their families are important issues in palliative care. Therefore, there is a need to continuously evaluate the quality and outcomes of the care provided. In Japan, the Japan hospice and palliative evaluation (J-HOPE) study series has been conducted every three to four years since 2010, and we will conduct the fifth J-HOPE study (J-HOPE5). In the present paper, we describe the protocol of the J-HOPE5 study. The main objectives are: (1) to evaluate the processes, structures and outcomes of care at hospices or palliative care units; (2) to examine bereaved family members' self-reported psychosocial condition, such as grief and depression as bereavement outcomes; (3) to provide data to ensure and improve the quality of care provided by participating institutions via feedback based on the results from each institution; and (4) to provide clinical and academic information regarding the implications of various issues in palliative care by conducting specific research.
We will conduct a cross-sectional, anonymous, self-reported questionnaire survey. In total, 153 institutions have agreed to participate in this study, meaning that approximately 12,240 bereaved family members (n = 80/institution) will be sent a questionnaire.
This is one of the largest cross-sectional bereavement surveys to evaluate the quality of specialized palliative care for patients with cancer, both in Japan and worldwide. The large sample size of this study will enable wide analyses of specific targets and topics.
维持照护质量以及改善患者及其家属的生活质量（QOL）是姑息治疗中的重要问题。因此，有必要持续评估所提供照护的质量和结果。在日本，自2010年起每三到四年开展一次日本临终关怀与姑息治疗评估（J-HOPE）系列研究，我们将开展第五次J-HOPE研究（J-HOPE5）。在本文中，我们描述了J-HOPE5研究的方案。主要目标如下：（1）评估临终关怀机构或姑息治疗病房的照护过程、结构和结果；（2）调查丧亲家庭成员自我报告的心理社会状况，如作为丧亲结果的悲伤和抑郁；（3）通过基于各机构结果的反馈，提供数据以确保和改善参与机构所提供照护的质量；（4）通过开展特定研究，提供有关姑息治疗中各种问题影响的临床和学术信息。
我们将进行一项横断面、匿名的自我报告问卷调查。总共有153家机构同意参与本研究，这意味着将向约12240名丧亲家庭成员（每家机构n = 80）发送问卷。
这是日本乃至全球最大规模的评估癌症患者专科姑息治疗质量的横断面丧亲调查之一。本研究的大样本量将能够对特定目标和主题进行广泛分析。
