CONTEXT: Evaluation of end-of-life care is a key element in quality improvement, and population-based mortality follow-back designs have been used in several countries. This design was adapted to evaluate a Good Death in Japan.
OBJECTIVES: This study aimed to explain the scientific background and rationale for assessing the feasibility of a mortality follow-back survey using a randomized design.
DESIGN: We utilized a cross-sectional, questionnaire survey to assess feasibility using response rate, sample representativeness, effect on response rate with two methods, and survey acceptability.
SETTING/PARTICIPANTS: The subjects were 4,812 bereaved family members of patients who died from the major five causes of death: cancer, heart disease, cerebrovascular disease, pneumonia, or kidney failure, using mortality data.
RESULTS: Overall, 682 (14.2%) questionnaires could not be delivered, and 2,294 (55.5%) family members agreed to participate in the survey. There was little difference in the distribution of characteristics between the study subjects and the full population, and sample representativeness was acceptable. Sending the questionnaire with a pen achieved a higher response rate than without (weighted: 48.2% vs. 40.8%; p<0.001). In follow-up contact, there was no difference in response rate between resending the questionnaire and a reminder letter alone (weighted: 32.9% vs. 32.4%; p=0.803). In total, 84.8% (weighted) of the participants agreed with improving quality of care through this kind of survey.
CONCLUSIONS: This study demonstrated the feasibility of conducting a population-based mortality follow-back survey using a randomized design. An attached pen with the questionnaire was effective in improving the response rate.
Background: Palliative care is highly relevant for patients with heart failure (HF), and there is a need for quantitative information on quality of care. Accordingly, this study aimed to develop a set of quality indicators (QIs) for palliative care of HF patients, and to conduct a practical pilot measurement of the proposed QIs in clinical practice.
Methods and Results: We used a modified Delphi technique, a consensus method that involves a comprehensive literature review, face-to-face multidisciplinary panel meeting, and anonymous rating in 2 rounds. A 15-member multidisciplinary expert panel individually rated each potential indicator on a scale of 1 (lowest) to 9 (highest) for appropriateness. All indicators receiving a median score =7 without significant disagreement were included in the final set of QIs. Through the consensus-building process, 35 QIs were proposed for palliative care in HF patients. Practical measurement in HF patients (n=131) from 3 teaching hospitals revealed that all of the proposed QIs could be obtained retrospectively from medical records, and the following QIs had low performance (<10%): “Intervention by multidisciplinary team”, “Opioid therapy for patients with refractory dyspnea”, and “Screening for psychological symptoms”.
Conclusions: The first set of QIs for palliative care of HF patients was developed and could clarify quantitative information and might improve the quality of care.
BACKGROUND: Advance care planning (ACP) is recommended as part of the management of patients with heart failure (HF).
AIMS: To develop and validate ACP support tools for patients with HF.
METHODS: An ACP support tool was developed based on a systematic literature review. A multi-center, prospective before and after study was conducted to evaluate the usefulness of the support tool. This study included 21 patients with HF, 11 patients formed the control group and 10 patients were part of the intervention group who received ACP from medical staff using the ACP support tools developed for this study. Participants of the study were surveyed about their experience of ACP using a 6-point Likert scale.
FINDINGS: All of the healthcare professionals (n=9) involved in the study found the ACP tool useful and about 90% of patients considered the support tool useful. The score for 'the patient did not feel anxious about the future after receiving ACP discussion' was significantly higher (3.5 [3.0, 4.0] vs 2.0 [1.0, 3.0]; P=0.04) in the intervention group that used the ACP tool.
CONCLUSION: ACP support tools are useful to manage patients with HF and could enable effective ACP without increasing patient anxiety.
Background: The number of hospital-based palliative care consultation teams (PCCTs) has increased in Japan, and quality improvement (QI) of PCCTs is an issue. The Japanese Society for Palliative Medicine is building a framework for continuous QI of PCCT activities.
Objective: The objective of this study was to develop a program to support QI for PCCTs, and to describe the initial experience with the program.
Design: The report details the development of a self-check program, followed by a one-year follow-up observational survey.
Methods: We developed a self-check program using the concept of the Plan-Do-Check-Act (PDCA) cycle and a multidisciplinary expert panel. A total of 114 PCCTs entered the program in the first year.
Results: We developed three forms for the CHECK, ACT-PLAN, and DO phases aligned with the PDCA cycle. The forms consisted of 34 items across 8 domains. A total of 83 PCCTs (729 members) returned the CHECK, ACT-PLAN forms, and 41 PCCTs returned the DO forms after one year. Overall, 213 high priority issues were identified in the ACT phase. The issues of many PCCTs were "Sharing goals of care is inadequate within the PCCT (33%)" and "Sharing goals of care is inadequate between patient/family or primary team and the PCCT (28%)." Improvements in identified issues were: "achieved" 23% and "almost achieved" 48% after one year.
Conclusions: We developed a self-check program to support QI efforts for hospital-based PCCTs. The priority issues among PCCTs and improvement goals with examples were identified. These results will support ongoing efforts to develop a continuous improvement model for QI of PCCTs.
CONTEXT: The Cancer Control Act was passed in Japan in 2007, and various additional programs on palliative care have been implemented to improve quality of life and relieve pain and suffering in patients with cancer. However, how clinical settings have changed remains unclear.
OBJECTIVES: The primary aim of the present study was to determine changes in nurses' palliative care knowledge, difficulties, and self-reported practices between 2008 and 2015.
METHODS: This study was an analysis of two nationwide observational studies from 2008 to 2015. We conducted two questionnaire surveys for representative samples of nurses in designated cancer hospitals, community hospitals, and district nurse services. The measurements used the Palliative Care Knowledge Test (PCKT, range 1-100), the Palliative Care Difficulties Scale (PCDS, range 1-5), and the Palliative Care Self-Reported Practice Scale (PCPS, range 1-5). Comparisons were made using the nonpaired Student t-test and a multivariate linear regression model using two cohorts.
RESULTS: We analyzed survey results for 2707 nurses in 2008 and 3649 nurses in 2015. Significant improvements were seen in PCKT, PCDS, and PCPS total scores for nurses in every work location over the seven-year study period, with PCKT total scores of 53 vs. 65 (P < 0.001; effect size = 0.60), 47 vs. 55 (P < 0.001; effect size = 0.40), and 52 vs. 55 (P = 0.118; effect size = 0.13), PCDS total scores of 3.0 vs. 2.5 (P < 0.001; effect size = 0.76), 3.4 vs. 2.8 (P < 0.001, effect size = 0.91), and 3.2 vs. 2.9 (P < 0.001; effect size = 0.53), and PCPS total scores of 3.7 vs. 4.0 (P < 0.001; effect size = 0.13), 3.5 vs. 3.8 (P < 0.001; effect size = 0.42), and 3.8 vs. 4.0 (P < 0.011; effect size = 0.21) in designated cancer hospitals, community hospitals, and district nurse services, respectively.
CONCLUSION: Nurses' palliative care knowledge, difficulties, and self-reported practices improved over the seven-year study period, especially in terms of expert support in designated cancer hospitals and knowledge among nurses in designated cancer hospitals.
CONTEXT: Hospital-based palliative care consultation teams (PCCTs) are rapidly being disseminated throughout Japan. The roles of PCCTs have changed over the past decade, particularly with the introduction of a modified national cancer care act to promote early palliative care and integrated oncology and palliative care.
OBJECTIVES: This study aimed to develop a consultation team standard for hospital-based palliative care in Japan.
METHODS/DESIGN: We developed a provisional standard based on literature review, and used a modified questionnaire-based Delphi method. Our Delphi panel comprised 20 experts selected from all relevant disciplines.
RESULTS: All experts selected responded to the surveys over all rounds, and 14 of the 20 participated in the panel meeting. In the first-round, 79 of 109 statements were judged to be appropriate, and 30 of 109 led to disagreements. 16 of those 30 statements underwent minor revision, 1 was divided into two statements, and 13 remained unchanged. We then added 6 statements based on a discussion among participants and authors. Additionally, based on comments from an external reviewer, we revised the standard, resulting in 4 statements being combined into 2 for a new total of 114 statements. In the second-round, 108 of 114 statements were judged to be appropriate, and in the third-round, none of the 6 controversial statements were judged to be appropriate. The final version comprised 108 statements.
CONCLUSION: We developed a standard for PCCTs in Japanese cancer hospitals. This standard provides a useful guide for clinical activities and a tool to evaluate quality of palliative care.
PURPOSE: We explored pediatricians' practices and attitudes concerning end-of-life discussions (EOLds) with pediatric patients with cancer, and identified the determinants of pediatricians' positive attitude toward having EOLds with pediatric patients.
METHODS: A multicenter questionnaire survey was conducted with 127 pediatricians specializing in the treatment of pediatric cancer.
RESULTS: Forty-two percent of participants reported that EOLds should be held with the young group of children (6–9 years old), 68% with the middle group (10–15 years old), and 93% with the old group (16–18 years old). Meanwhile, 6, 20, and 35% of participants answered that they “always” or “usually” discussed the incurability of the disease with the young, middle, and old groups, respectively; for the patient’s imminent death, the rates were 2, 11, and 24%. Pediatricians’ attitude that they “should have” EOLds with the young group was predicted by more clinical experience (odds ratio [OR] 1.077; p = 0.007), more confidence in addressing children’s anxiety after EOLd (OR 1.756; p = 0.050), weaker belief in the demand for EOLd (OR 0.456; p = 0.015), weaker belief in the necessity of the EOLd for children to enjoy their time until death (OR, 0.506; p = 0.021), and weaker belief in the importance of maintaining a good relationship with the parents (OR 0.381; p = 0.025).
CONCLUSIONS: While pediatricians nearly reached consensus on EOLds for the old group, EOLds with the young group remain a controversial subject. While pediatricians who supported EOLds believed in their effectiveness or necessity, those who were against EOLds tended to consider the benefits of not engaging in them.
BACKGROUND: Palliative care education for health care professionals is a key element in improving access to quality palliative care. The Palliative Care Emphasis Program on Symptom Management and Assessment for Continuous Medical Education (PEACE) was designed to provide educational opportunities for all physicians in Japan. As of 2015, 57,764 physicians had completed it. The objective of this study was to estimate the effects of the program.
METHODS: This study was an analysis of 2 nationwide observational studies from 2008 and 2015. We conducted 2 questionnaire surveys for representative samples of physicians. The measurements used were the Palliative Care Knowledge Test (range, 0-100) and the Palliative Care Difficulties Scale (range, 1-4). Comparisons were made with the unpaired Student t test and with a multivariate linear regression model using 2 cohorts and a propensity score-matched sample.
RESULTS: This study analyzed a total of 48,487 physicians in 2008 and a total of 2720 physicians in 2015. Between 2008 and 2015, physicians' knowledge and difficulties significantly improved on the Palliative Care Knowledge Test with total scores of 68 and 78, respectively (P < .001; effect size, 0.40) and on the Palliative Care Difficulties Scale with total scores of 2.65 and 2.49, respectively (P < .001; effect size, 0.29). Propensity-score matching resulted in 619 untrained physicians matched to 619 trained physicians, and physicians who trained with the PEACE program had a higher knowledge score (74 vs 86; P < .001; effect size, 0.64) and a lower difficulties score (2.6 vs 2.3; P < .001; effect size, 0.42).
CONCLUSIONS: Physicians' knowledge of and difficulties with palliative care improved on a national level. The PEACE program may have contributed to these improvements.