Web-Based Post-Bereavement Survey System in Specialized Palliative Care: A Feasibility Pilot Study.

Web-based post-bereavement survey systems for specialized palliative care will enable obtaining timely results on the care quality from more participants at a lower cost. The primary aim of the study was to develop a web-based post-bereavement survey system and to compare response rates for different number of items. The secondary aim was to examine response bias between web-based and mail survey in post-bereavement surveys. Between January and April 2019, two cross-sectional web-based questionnaire surveys were conducted among the bereaved families from six inpatient palliative care units in Japan. Measurements included structure and process of end-of-life (EOL) care, overall care satisfaction, achievement of a good death, depression, grief status, web survey usability, and participant and bereaved family member characteristics. The long survey included 34 items, and the short survey included 16 items. There were no significant differences in the response rates between the long and short surveys (24% and 27%, respectively, p = 0.376). Compared with a previous nationwide post-bereavement mail survey, more children responded; however, the quality rating scores was unchanged. Despite low response rate, no apparent response bias was observed, indicating its feasibility. This survey method is low-cost, less burdensome to the institution, and allows for ongoing quality assurance.

Reliability and validity of the Japanese version of the Quality of Life Index for patients with cancer.

This study was designed to evaluate the psychometric properties of the newly completed Japanese translation of the Ferrans and Powers Quality of Life Index Cancer Version III (QLI). Using a cross-sectional descriptive design, 136 ambulatory patients with gastrointestinal cancer (55 receiving chemotherapy, 76 with stable health status after treatment, and five status not known) completed a questionnaire at a one-time point, and 26 patients (stable health status) completed the questionnaire again 2 weeks later. Internal consistency reliability was supported by Cronbach's α of .96 for the total scale, with subscales ranging from .83 to .93. A test-retest correlation of 0.76 (total scale) provided evidence of stability reliability over a 2-week period, with subscale retest correlations ranging from 0.70 to 0.83. Confirmatory factor analysis showed the same four domains for the Japanese translation as the original QLI, supporting construct validity. We also assessed construct validity by examining the relationships between the Japanese QLI and six other concepts known to be related to the quality of life. As hypothesized, all correlations were moderate and in the expected direction (pain -0.39, anxiety -0.54, depression -0.63, stress -0.51, pain interfering with functioning -0.52, and general health 0.62). This evidence of the reliability and validity of the Japanese translation of the QLI supports its use in research and clinical practice to evaluate the impact of cancer and treatment. This new translation can be used to assess the patient's perspective of their quality of life, both within Japan and in cross-cultural studies with the QLI in other languages.

Achievement of a good death among young adult patients with cancer: analyses of combined data from three nationwide surveys among bereaved family members.

PURPOSE: Although little improvement has been made in the survival rate among young cancer patients over recent decades, whether they have achieved a good death has never been systematically explored. We aimed to clarify whether young cancer patients (aged 20-39 years) have achieved a good death, and compare their achievement with that of middle-aged patients (aged 40-64 years). METHODS: We analyzed combined data of three nationwide, cross-sectional surveys of families of cancer patients who died at inpatient hospices in Japan (2007-2014). We measured 10 core items of the Good Death Inventory (GDI) short-version on a 7-point scale, and calculated rates of "agree/absolutely agree" and the mean scores. RESULTS: We analyzed 245 and 5140 responses of families of young and middle-aged patients, respectively. Less than 60% of families of young patients reported "agree/absolutely agree" regarding 9 items, which included "feeling that one's life was completed" in 44 (18%; 95% confidence interval (CI) = 14-23%), "being independent in daily life" in 48 (20%; 95% CI = 15-25%), and "being free from physical distress" in 103 (42%; 95% CI = 36-48%) young patients. Young patients were significantly less likely to feel "one's life was completed" (mean = 3.3 (standard deviation = 2.0) vs. 3.8 (1.9), respectively; effect size (ES) = 0.29; adjusted p value = 0.000) and "not being a burden to others" (3.1 (1.5) vs. 3.5 (1.6), respectively; ES = 0.24; adjusted p value = 0.010) than the middle-aged. CONCLUSIONS: Overall, young cancer patients did not achieve a good death. Future efforts are needed to improve the quality of palliative care for young patients, focusing on psychosocial/spiritual suffering.

One-year follow-up of an educational intervention for palliative care consultation teams.

OBJECTIVE: This study explored how an educational intervention affects interdisciplinary palliative care consultation teams. METHODS: A pre-post questionnaire survey conducted before the intervention, as well as immediately, 3, 6 and 12 months later. The outcome measurements were behavior (four domains-17 items) and confidence (one domain-6 items). RESULTS: Of the 252 workshop participants (63 teams), 248 submitted a pre-intervention response, 240 responded immediately after, 198 after 3 months, 197 after 6 months and 184 after 12 months. The behavior domain score significantly increased from pre- to 12 months post-intervention, as follows: 'regional partnership and consultation availability from medical personnel in region', from 15.0 to 17.8 (P < 0.001, effect size = 0.59); 'direct practice or care by member', from 12.8 to 13.4 (P < 0.001, effect size = 0.26); 'provision of information to patient and family', from 11.4 to 12.5 (P < 0.001, effect size = 0.42). The confidence score for palliative care consultation teams activities significantly increased from 18.5 pre-intervention to 20.2 at 12 months later (P < 0.001, effect size = 0.37). By the analysis according to the profession of the team member, the score changes for physicians and psychiatrists were larger than that for nurses and pharmacists. CONCLUSIONS: Participant behavior and confidence scores significantly increased after the educational intervention for the interdisciplinary team. In particular, physicians and psychiatrists showed the largest change. Future studies are needed to confirm the findings.

Work environmental factors associated with compassion satisfaction and end-of-life care quality among nurses in general wards, palliative care units, and home care settings: A cross-sectional survey.

BACKGROUND: Nurses providing end-of-life care experience not only burnout and compassion fatigue, but also positive effects such as compassion satisfaction. Nurses' compassion satisfaction was shown to be related to job satisfaction, work engagement, and nurse caring. Studies in emergency departments, intensive care units, oncology wards, and general wards have identified work environmental factors associated with nurses' compassion satisfaction, but no similar studies have been conducted in palliative care units or home care settings. It is also unknown whether work environmental factors associated with compassion satisfaction contribute to end-of-life care quality. OBJECTIVE: To explore work environmental factors associated with nurses' compassion satisfaction and end-of-life care quality in three types of workplaces: general wards, palliative care units, and home care settings. DESIGN: A cross-sectional survey of nurses providing end-of-life care. SETTINGS: Sixteen general wards, 14 palliative care units, and 25 home-visit nursing agencies in Japan. PARTICIPANTS: There were 347 study participants: 95 nurses in general wards, 128 in palliative care units, and 124 in home care settings. METHODS: Compassion satisfaction was assessed using the Professional Quality of Life Scale, and end-of-life care quality was rated on a 4-point scale. Work environments were assessed using the Areas of Worklife Survey, which measures the fit between an individual and their work environment in six areas: workload, control, reward, community, fairness, and values. RESULTS: Compared to nurses in general wards and palliative care units, home care nurses scored statistically significantly higher on all work environmental factors except reward. Work environmental factors that were significantly positively associated with higher compassion satisfaction were values in general wards (ß = 0.335, P = 0.007), reward and workload in palliative care units (ß = 0.266, P = 0.009 and ß = 0.179, P = 0.035), and community and control in home care settings (ß = 0.325, P = 0.001 and ß = 0.261, P = 0.004). In addition, higher scores for workload in general wards (odds ratio = 5.321; 95 % confidence interval, 1.688-16.775) and for community in palliative units (odds ratio = 2.872; 95 % confidence interval, 1.161-7.102) were associated with higher end-of-life care quality. No associated work environmental factors were found in home care settings. CONCLUSIONS: Work environmental factors associated with nurses' compassion satisfaction and end-of-life care quality varied between workplaces. These results may contribute to creating work environments that are appropriate for each workplace type to maintain both nurses' compassion satisfaction and end-of-life care quality. TWEETABLE ABSTRACT: Work environmental factors associated with nurses' compassion satisfaction and end-of-life care quality were identified in three workplaces.

Multiple evaluation of a hospital-based palliative care consultation team in a university hospital: activities, patient outcome, and referring staff's view.

OBJECTIVE: Although the number of hospital-based palliative care consultation teams (PCCTs) is rapidly increasing in Japan, there is limited information available concerning the activities and usefulness of PCCT in the country. The aim of this study is to clarify the activities, patient outcome, and referring staff's view of an established PCCT in Japan. METHOD: This was a prospective study to follow patients referred to a PCCT for 28 days over a 1-year period. Patients were assessed by the Support Team Assessment Schedule-Japanese version (STAS-J) and EORTC QLQ C-30 at the time of referral and on days 7, 14, and 28. A staff survey was implemented using a questionnaire after each observation period. RESULTS: Of 180 patients referred, 53 patients were eligible for the study. Although the median of the number of the reasons for referral was 1, the PCCT provided several kinds of support: pain management, 94%; emotional support for the patient, 49%; and emotional support for the family, 36%. On day 7 after referral, of the items of STAS-J and the EORTC QLQ C-30 subscales, only insomnia improved significant whereas "other physical symptoms" and constipation were significantly exacerbated. In the staff survey, of the 98 respondents, more than 90% considered the effect of the PCCT as "excellent" or "good" and were satisfied with the support provided. SIGNIFICANCE OF RESULTS: This study showed that the PCCT performed comprehensive assessments on referred patients and provided extra support. No patient's QOL 1 week after referral was improved with the exception of insomnia. Referring staff highly evaluated the activities of the PCCT. In the evaluation of PCCTs, further research about the variation of clinical activities of PCCTs, their applicability, and benefit is needed.

Nursing autonomy plays an important role in nurses' attitudes toward caring for dying patients.

The aim of this study was to clarify the relationship of nursing autonomy and other factors related to attitudes toward caring for dying patients. A cross-sectional survey of nurses was conducted in November 2003 using a self-administered questionnaire. We collected demographic data from 178 (75%) participants and used the Frommelt Attitude Toward Care of the Dying scale, Form B, Japanese version (FATCOD-Form B-J), the Pankratz Nursing Questionnaire (PNQ), and the Death Attitude Inventory (DAI). FATCOD-Form B-J measures nurse's attitude toward caring for dying patients. It includes two subscales: positive attitude toward caring for the dying patient and perception of patient- and family-centered care. The PNQ measures nursing autonomy of individual nurses and has three subscales: nursing autonomy and advocacy, patients' rights, and rejection of traditional role limitations. The DAI measures attitudes toward death in context of Japanese cultural characteristics. It includes seven subscales: afterlife beliefs, death anxiety, death relief, death avoidance, life purpose, death concern, and supernatural beliefs. We investigated the factors associated with the FATCOD-Form B-J. Support of a mentor regarding end-of-life issues (beta = .19, P = .001), death avoidance domain of the DAI (beta = -.14, P = 0.03), life purpose domain of the DAI (beta = .23, P = .001), and rejection of traditional role limitations domain of the PNQ (beta = .51, P = .001) were selected as significant independent variables by multivariate analysis to evaluate nurses' positive attitudes toward caring for dying patients. Death anxiety domain of the DAI (beta = -.17, P = .02), patients' rights domain of the PNQ (beta =.46, P = .001), and rejection of traditional role limitations domain of the PNQ (beta = .34, P = .001) were selected as significant independent variables by multivariate analysis to evaluate the nurses' perception of patient-and family-centered care. In conclusion, nursing autonomy plays an important role in the attitudes of Japanese nurses who care for dying patients. Educational and administrative efforts to strengthen nursing autonomy are necessary.

Progressive development and enhancement of palliative care services in Japan: nationwide surveys of designated cancer care hospitals for three consecutive years.

CONTEXT: Policymaking plays an important role in national palliative care services. The Japanese Cancer Control Act was implemented in 2006. OBJECTIVES: To evaluate changes in the structure and processes of palliative care services after implementation of the Cancer Control Act. METHODS: We conducted annual nationwide surveys in designated cancer care hospitals (DCCHs, n = 349) between 2008 and 2010. The 65-item questionnaire was divided into seven domains: institutional framework, information to patient and family, practice of palliative care, activities of the palliative care teams (PCTs), members of PCTs, regional medical cooperation, and education. Increasing trends were tested using generalized estimating equation models. RESULTS: The response rates were ≥ 99%. All domains showed an increasing trend (P < 0.001). There were significant increases in full-time PCT physicians (27.4%-45.7%, P(trend) < 0.001), full-time PCT nurses (38.9%-88.0%, P(trend) < 0.001), and the median number of annual referrals to PCTs (60-80 patients, P < 0.001). Essential drugs were available in most DCCHs from baseline. Although outpatient clinics increased significantly (27.0%-58.9%, P(trend) < 0.001), community outreach programs did not (9.0%-12.6%, P = 0.05). Basic education was actively introduced for in-hospital physicians and nurses (78.2% and 91.4% in 2010), but often unavailable for regional health care providers (basic education for regional physicians and nurses: 63.9% and 71.1% in 2010). CONCLUSION: The Cancer Control Act promoted the development and enhancement of palliative care services in DCCHs. Regional medical cooperation and education are the future challenges of palliative care in Japan.

Assessment of reasons for referral and activities of hospital palliative care teams using a standard format: a multicenter 1000 case description.

CONTEXT: The many benefits of hospital palliative care teams (PCTs) are well known. However, their specific activities have not been fully clarified, and no standardized methods for reporting PCT activities are available. OBJECTIVES: The aim of this study was to investigate, through the use of a standard format, the activities performed by hospital PCTs in Japan. METHODS: This was a prospective observational study. A total of 21 hospital PCTs were included in this study, and each recruited approximately 50 consecutively referred patients. Participating PCTs filled in a standard form for reporting activities. RESULTS: We obtained data from 1055 patients who were referred to PCTs. Of the 1055 patients, 1005 patients (95%) had cancer. The median number of reasons for referral and problems identified by PCTs was two (0-22) and four (0-18), respectively. The two major reasons for referral were pain (63%) and anxiety/depression/grief/emotional burden (22%). The major recommendations were pharmacological treatment (74%), care for the patient's physical symptoms (49%), and support for patient's decision making (38%). The major activities performed by the PCTs were comprehensive assessment (90%), care for the patient's physical symptoms (77%), and pharmacological treatment (74%). CONCLUSION: The components of hospital PCT activities were successfully measured using the Standard Format for Reporting Hospital PCT Activity. The results of this study and the format for reporting hospital PCT activity could be effective in improving hospital PCT practice and for the education of new hospital PCT members.

Discharge from a palliative care unit: prevalence and related factors from a retrospective study in Japan.

PURPOSE: Selecting a place for end-of-life care is an important issue for patients with cancer. In this study we conducted a retrospective analysis on the prevalence of discharge from a palliative care unit (PCU) and explored factors related to discharge based on individual-level data from 5 years of experience at the Tokyo Metropolitan Toshima Hospital PCU. METHODS: We retrospectively collected information on patients and families from the admission database of the PCU. We calculated the prevalence of patients discharged from the PCU and explored the factors related to discharge using bivariate and multivariate analysis. RESULTS: The subjects were 498 terminal patients with cancer. The overall discharge rate was 33%. For subjects who were admitted for symptom control, the discharge rate was 54%. The duration of the period from referral to death (odds ratio [OR] = 4.98, p < 0.001), Eastern Cooperative Oncology Group Performance States [ECOG PS]_OR = 0.51, p = 0.003), problems with oral intake (OR = 0.41, p = 0048), presence of nausea (OR = 0.41, p = 0.046), experience of radiation therapy (OR = 0.27, p = 0.003), and patient's anxiety for family (OR = 0.35, p = 0.029) were independent related factors for discharge from the PCU, according to logistic regression. CONCLUSION: Early referral to the PCU and development of alleviation methods for symptoms such as nausea and anxiety and depression are important for promoting discharge and would contribute to the patient's quality of life at the end of life.

Development of a standard for hospital-based palliative care consultation teams using a modified Delphi method.

Although palliative care consultation teams are rapidly being disseminated throughout Japan as a result of government policy, the role of these teams has not been standardized. The aim of this study was to develop a hospital-based palliative care consultation team standard. We adopted a modified Delphi method to develop a standard. Twenty-seven multiprofessional panelists were selected according to two criteria: adequate experience as part of a palliative care consultation team and representative of 16 palliative care-related organizations. Panelists rated the appropriateness of 33 statements in a provisional standard, which was generated by the authors, using a nine-point Likert-type scale in a first-round survey. We set two criteria for agreement: the median value was 8 or more, and the difference between the minimum and maximum was 4 or less. There were 15 disagreements in the first-round survey. Based on discussions through e-mails and a panel meeting, these 15 statements were dealt with as follows: one was rejected, one was combined with another statement, three were unmodified, and 10 underwent minor revisions. Moreover, two statements that generated agreement were divided into two statements each. Consequently, the number of statements was 37. In a second-round survey, three statements engendered disagreement and were modified. At the end of the process, there were 37 statements in four areas: "philosophy and policy," "structure for care provision," "contents of activities," and "quality assurance and care improvements." This standard may be useful as a clinical activity guide as well as a method to evaluate palliative care consultation teams.

The current status of palliative care teams in Japanese university hospitals: a nationwide questionnaire survey.

GOAL: Although the importance of the palliative care team (PCT) to university hospitals is widely accepted, the issues of palliative care at the national level have not been clarified. We conducted a nationwide survey of the current status of PCTs in all (123) Japanese university hospitals. MATERIALS AND METHODS: In 2003, 2004 and 2005, the authors conducted a self-reporting cross-sectional survey. Questionnaires were mailed to nursing directors and selected PCT members of all Japanese university hospitals. RESULTS: Of 123 hospitals in 2005, 99 (80%) returned the questionnaire; 33% used PCTs, and 11% used certified PCTs. Our findings include: annual number of patients treated by PCTs (83/70 +/- 64, mean/median +/- SD), daily number of patients treated by PCTs (12/11 +/- 14), and days of PCT care per patient (30/30 +/- 22). Certified PCTs treated more patients per year (p = 0.004) and more patients per day (p < 0.001) compared to noncertified PCTs. Over the 3-year period, the number of hospitals utilizing PCTs only slightly increased (2003: 27%, 2004: 29%, 2005: 33%), as did those using certified PCTs (2003: 3%, 2004: 9%, 2005: 11%). In 2005, the reasons for noncertification of PCTs included "lack of physicians who specialize in palliative care (82%)" and "lack of nurses who specialize in palliative care (56%)." CONCLUSIONS: The entire system of palliative care in Japanese university hospitals is currently insufficient. The lack of physicians and nurses who specialize in palliative care is a significant barrier, and therefore, the initiation of a formal training system for these health care professionals is a high priority issue.

Factors associated with difficulties encountered by nurses in the care of terminally ill cancer patients in hospitals in Japan.

OBJECTIVE: To identify the factors associated with difficulties encountered by nurses working in general wards in hospitals in Japan. METHODS: Questionnaires including items regarding difficulties in providing care to terminally ill cancer patients, the existence of a mentor regarding end-of-life issues, awareness of end-of-life issues, and demographic factors were administered to 375 staff nurses working in general in-patient wards. Multivariate regression analyses were employed to investigate correlations between factors. RESULTS: Multivariate regression analysis revealed that the existence of a mentor for end-of-life issues was associated with fewer difficulties in all areas other than "Knowledge and skill of nurses." Clinical experience was inversely related to difficulties in "Communication with patients and families" and "Personal issues." Greater awareness of end-of-life issues was related to higher difficulties in most areas. SIGNIFICANCE OF RESULTS: The existence of a mentor was correlated with fewer difficulties in most areas. Support by a palliative care team might be effective in reducing difficulties experienced by nurses and in improving care for terminally ill cancer patients. Basic communication training undertaken sooner after registration might be also useful.

Pain management and related factors in advanced cancer patients who initiated opioid therapy in an outpatient setting.

OBJECTIVE: The aim of this study was to clarify the state of pain management in Japanese patients with advanced cancer who initiated opioid therapy in an outpatient setting. METHODS: Interview surveys using questionnaires were conducted and medical records were reviewed. Pain relief was defined as >33% decrease in worst pain intensity score, and significance of early pain relief was investigated in terms of changing self-efficacy for activities of daily living (ADL). Factors related to early pain relief were also investigated. RESULTS: The study was conducted between June and December 2003, on 20 patients (13 women, 7 men; mean age, 59 years). Compared to score at initiation of opioid administration (Numerical Rating Scale, 8.3 +/- 1.3), pain relief was generally insufficient at 2 weeks (early pain relief ratio was only 42%). Patients with sufficient pain relief at 2 weeks displayed significant improvements in numerous ADL functions and symptom-coping efficacy (p = 0.037), confirming the importance of early pain relief. Early pain relief was associated with high frequency of hospital visits before opioid administration and absence of sudden excavation within the first 2 weeks. SIGNIFICANCE OF RESULTS: Result of this study indicated insufficient pain relief at an outpatients setting with advanced cancer patients. In the meantime, patients had who their pain decrease after 2 weeks also had improved ADL and self-efficacy at the same time. These findings suggest that to achieve early pain relief in an outpatient setting, clinical staff must assess pain earlier and inform patients of possible breakthrough pain following opioid administration and available treatments for such occurrences.

Difficulties encountered by nurses in the care of terminally ill cancer patients in general hospitals in Japan.

The aim of this study was to investigate the difficulties encountered by nurses who have cared for terminally ill cancer patients at general hospitals. To collect data, a survey by questionnaire was self-administered. The respondents were 375 nurses and the response rate was 70.2%. Factor analysis was conducted on 80 items related to the difficulties encountered by nurses who have cared for terminally ill cancer patients to allow reasonable item reduction and to explore better domains. Two items were excluded and the results revealed eight underlying domains: 'Communication with patients and families', 'Knowledge and skill of nurses', 'Treatment and informed consent (IC)', 'Personal issues', 'Collaboration as a team including patients and families', 'Environment and system', 'Collaboration among nurses', and 'Near-death issues'. Cronbach's alpha coefficients for each domain ranged from 0.77 to 0.93. The results showed that nurses working at general hospitals have experienced a high degree of difficulty overall while caring for the dying, particularly with communication with patients and families. It was concluded that this study was useful in determining the specific areas where nursing education and research should be focused.

Reliability and validity of the Japanese version of the Support Team Assessment Schedule (STAS-J).

OBJECTIVE: The aim of this project was to develop an appropriate and valid instrument for assessment by medical professionals in Japanese palliative care settings. METHODS: We developed a Japanese version of the Support Team Assessment Schedule (STAS-J), using a back translation method, and tested its reliability and validity. In the reliability study, 16 nurses and a physician who work in a palliative care unit evaluated 10 hypothetical cases twice at 3-month intervals. For the validity study, external researchers interviewed 50 patients with matignancy and their families and compared the results with ratings by the nurses in the palliative care unit. RESULTS: Our results with hypothetical cases were: interrater reliability weighted kappa = 0.53-0.77 and intrarater reliability weighted kappa = 0.64-0.85. In the validity study comparing nurse evaluations and the results of interviews with patients and families, complete agreement was 36-70%, and close agreement (+/-1) was 74-100%. As a whole, weighted kappa were low: between -0.07 and 0.51. Our results were similar to those in the United Kingdom and Canada. SIGNIFICANCE OF RESULTS: Although this research was conducted under methodologically limited conditions, we concluded that the STAS-J is a reliable tool and its validity is acceptable. The STAS-J should become a valuable tool, not only for daily clinical use, but also for research.