Protocol of a nation-wide post-bereavement survey on quality of hospice and palliative care: J-HOPE 5 study.

Abstract

Background: 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.

Methods: 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.

Discussion: 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.