Maho Aoyama

The Japan HOspice and Palliative Care Evaluation Study 3: Study Design, Characteristics of Participants and Participating Institutions, and Response Rates:

This article describes the whole picture of Japan HOspice and Palliative Care Evaluation Study 3 (J-HOPE3 Study) including study design and demographic data. The aims of the J-HOPE3 study were to (1) evaluate the process, structure, and outcome of palliative care in the following care settings: acute hospitals, inpatient hospice/palliative care units (PCUs), and home hospice services; (2) examine bereaved family members’ self-reported psychosocial conditions, such as grief and depression, as bereavement outcomes; (3) provide data to ensure and improve the quality of care provided by participating institutions through feedback concerning results for each institution; and (4) perform additional studies to explore specific clinical research questions. We conducted a cross-sectional, anonymous, self-report questionnaire survey involving patients’ bereaved family members in 20 acute hospitals, 133 PCUs, and 22 home hospice services between May and July 2014. Two types of questionnaires were used: main and specific studies questionnaires. The questionnaire was sent to totally 13 584, and 10 157 returned the questionnaire. The analysis included 9126 family members’ questionnaires from acute hospitals, PCUs, and home hospice services. Respondents’ average age was 61.6 years, 55% were women, and 40% had been married to the deceased. With respect to the characteristics of participating institutions, most institutions did not have religious affiliations, and most PCUs and home hospice services provided bereavement care. These results of the analysis of common and additional questionnaires could play an important role in clinical settings, quality improvement, research, and public accountability.

Eating-related distress and need for nutritional support of families of advanced cancer patients: a nationwide survey of bereaved family members.

A number of advanced cancer patients are suffering from physical and psychosocial burdens because of cancer cachexia, and these burdens also greatly impact on their family members and relationships between patients and family members. It is necessary to consider the psychosocial impact of cancer cachexia on family members of advanced cancer patients.

Development the Care Evaluation Scale Version 2.0: a modified version of a measure for bereaved family members to evaluate the structure and process of palliative care for cancer patient

BackgroundThe Care Evaluation Scale (CES1.0) was designed to allow bereaved family members to evaluate the structure and process of care, but has been associated with a high frequency of misresponses. The objective of this study was to develop a modified version of CES1.0 (CES2.0) that would eliminate misresponses while maintaining good reliability and validity.MethodsWe conducted a cross-sectional questionnaire survey by mail in October 2013. The participants were bereaved family members of patients who died from cancer in seven institutions in Japan. All family members were asked to complete CES2.0, the short form CES1.0, items on overall care satisfaction, the Family Satisfaction with Advanced Cancer Care (FAMCARE) Scale, the Patient Health Questionnaire-9 (PHQ-9) and the Brief Grief Questionnaire (BGQ). To examine test-retest reliability, all participants were asked to complete a second CES2.0.ResultsOf 596 questionnaires sent, 461 (77%) were returned and 393 (66%) were analyzed. In the short form CES1.0, 17.1% of the responses were identified as misresponses. No misresponses were found in CES2.0. We identified 10 CES2.0 subscales similar to those in CES1.0 using exploratory factor analysis. Cronbach’s alpha was 0.96, and the intraclass correlation coefficient was 0.83. Correlations were found between CES2.0 and overall satisfaction (r = 0.83) and FAMCARE (r = 0.58). In addition, total CES2.0 scores were negatively correlated with the PHQ-9 (r = −0.22) and BGQ (r = −0.10).ConclusionThese results suggest that CES2.0 eliminated misresponses associated with CES1.0 while maintaining good reliability and validity and greatly improving test-retest reliability.

Factors associated with possible complicated grief and major depressive disorders

Complicated grief (CG) is considered a distinctive symptom from other bereavement‐related mental impairments such as major depressive disorder (MDD). CG and MDD may appear independently or co‐morbidly; however, the factors associated with each situation are unclear.

The distress and benefit to bereaved family members of participating in a post-bereavement survey

Background Few studies have simultaneously collected quantitative data regarding the positive and negative effects of participating in post-bereavement surveys. Methods We conducted a cross-sectional postal questionnaire survey in October 2013. Potential participants were caregivers for family members who had died in four inpatient palliative care units, two home hospices, and a general hospital. We collected opinions regarding the distress and benefit of completing a post-bereavement survey. After collecting data, we provided feedback to participating institutions in the form of study results and de-identified open-ended comments. Results Of 692 potential participants, 596 were sent questionnaires; 393 returned questionnaires were valid and analyzed. Of the respondents, 62% reported being distressed by completing the questionnaire. Female participants and those who were mentally ill during the caregiving period reported more distress. However, 86% of respondents reported they found the questionnaire beneficial. Better quality of end-of-life care and respondent depression were associated with more benefit. Major benefits were: contributing to the development of end-of-life care as a family (63%); expressing gratitude to the hospital and medical staff (60%); and looking back and reflecting on the end-of-life period (40%). Feeling benefit was not correlated with feeling distressed (P = -0.02). Conclusion In this large-scale study on the effects of post-bereavement surveys in Japan, many bereaved family members reported that completing the survey was beneficial. In addition to possibly having feelings of distress, post-bereavement surveys might also be beneficial to end-of-life care facilities.

The Japan hospice and palliative evaluation study 4: a cross-sectional questionnaire survey

BackgroundConstant evaluation is important for maintaining and improving the quality of end-of-life care. We therefore conduct the fourth Japan Hospice and Palliative Evaluation Study (J-HOPE4) as a continuous evaluation study. In this present paper, we describe the design of J-HOPE4. The main purposes of J-HOPE4 are as follows:1) to evaluate the processes, structures, and outcomes of palliative care acute hospitals, palliative care units, and home hospice services; 2) to examine bereaved family members’ self-reported psychosocial conditions, 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) provide clinical and academic information concerning the implications of various issues in palliative care by conducting additional studies.MethodsWe will conduct a cross-sectional, anonymous, self-reported questionnaire survey. In total, 190 institutions will participate in this study, meaning that 12,000 bereaved family members will be sent a questionnaire.DiscussionThis is one of the largest cross-sectional surveys involving hospice and palliative care, both in Japan and worldwide. Because this study will have a large sample size, the findings are expected to be generalizable to other settings.

Bereaved Family Members’ Perceptions of the Distressing Symptoms of Terminal Patients With Cancer

Background: Few data are available on bereaved family members’ perspective on the frequency of symptoms and degree of distress among terminal patients with cancer. Methods: We sent a questionnaire to 1472 bereaved family members of terminal patients with cancer in 20 general hospitals. The questionnaire asked them (1) to indicate which symptoms the patients had, (2) to rate on a 4-point scale the extent to which the symptom was distressing, as follows: 1 = not distressing, 2 = slightly distressing, 3 = quite distressing, and 4 = very distressing at the point of 2 weeks before the patient had died. Results: We analyzed 805 questionnaires for this study. Anorexia was the commonest symptom among terminal patients with cancer experienced by bereaved family members, followed by somnolence, weight loss, fatigue, and pain. Anorexia was the most distressing symptom among terminal patients with cancer experienced by bereaved family members, followed by weight loss, pain, edema, and dyspnea. Conclusions: Anorexia and weight loss were frequent symptoms and bereaved family members felt very distressing. Furthermore, there are not means of effective treatment now. Thus, we think that further study in this field is necessary.

Which Research Questions Are Important for the Bereaved Families of Palliative Care Cancer Patients? A Nationwide Survey

CONTEXT Bereaved family members are present from diagnosis to the end of life and can look back and evaluate the experience; in addition, the family itself is also an important subject in the care of the patient. Therefore, although it is essential to determine the priority research issues from the viewpoint of the patients and health care workers, it is also crucial to know the important research themes from the viewpoint of the bereaved family members. OBJECTIVES The purpose of this study was to identify research priorities for palliative care in Japan, based on the viewpoint of bereaved family members. METHODS/DESIGN We conducted a cross-sectional, self-report questionnaire survey. Content analysis was performed on free-text answers for research priorities. This study was carried out as part of the third Japan HOspice and Palliative Care Evaluation (J-HOPE3) study. RESULTS We extracted 1658 codes from the transcripts and organized them into 120 subcategories on the basis of similarity. Subcategories were then organized into eight categories as follows: <improvement in the structure of palliative care services>; <pain relief>; <communication>; <symptom management, other than pain>; <better care and assistance methods>; <publicizing and raising awareness of palliative care>; <cancer medical services>; and <knowledge, skill, and attitude of medical staff>. CONCLUSION The findings of this study can be used as a research agenda for palliative care, which should take first priority in the future, and could be carried out using limited resources.