Relationship of life expectancy with quality of life and health-related hope among Japanese patients receiving home medical care: The Zaitaku Evaluative Initiatives and Outcome Study.

Spiritual care for patients' quality of life (QOL) and hope should be included in home medical care for patients with limited life expectancy. This study aimed to analyze the associations between estimated life expectancy, QOL, and hope among patients receiving home medical care in Japan. This multicenter cross-sectional study involved 29 home medical care facilities in Japan. Patients were categorized by estimated life expectancy, as assessed by home medical care physicians. The outcomes were QOL measured via the Quality-of-Life Scale for Elderly Patients Receiving Professional Home Care (QOL-HC: higher score indicates better QOL), the domain scores of health-related hope ("health," "role and connectedness," and "something to live for"; higher scores indicate higher levels of hope), and life functioning measured using the WHO Disability Assessment Schedule 2.0 (WHODAS 2.0; higher score indicates worse functioning and disability). QOL-HC scores were significantly higher in patients with shorter life expectancy (< 6 m vs. ≥ 1 y, adjusted mean differences: 0.7 points [95%CI 0.1 to 1.3]). Regarding health-related hope, "something to live for" scores were associated with shorter life expectancy (< 6 m vs. ≥ 1 y, -17.7 points [-34.2 to -1.2]), whereas "role and connectedness" scores did not change remarkably with shorter life expectancy (< 6 m vs. ≥ 1 y, -3.3 points [-16.4 to 9.8]). Furthermore, shorter life expectancy was associated with higher WHODAS 2.0 scores (< 6 m vs. ≥ 1 y, 19.6 points [4.3 to 34.8]). Home medical care physicians who engage in spiritual care should facilitate thoughtful dialogue with their patients by recognizing declines in life functions and hope for fulfilment, which are associated with short life expectancy.

Relationship between patient-centred care and advance care planning among home medical care patients in Japan: the Zaitaku evaluative initiatives and outcome study.

BACKGROUND: There is a growing need to realize high-quality end-of-life care at home that respects the patient's wishes. OBJECTIVE: To examine the association between the quality of primary care and advance care planning (ACP) participation among patients receiving home-based medical care. METHODS: In this multicentre, cross-sectional study, 29 home medical care clinics in Japan were included. Adult Japanese patients receiving home medical care were surveyed to assess their consideration of ACP. The quality of primary care, which reflects patient-centredness, was assessed with the Japanese version of the Primary Care Assessment Tool-Short Form (JPCAT-SF). Information on the clinical conditions that require home medical care was collected from physicians. RESULTS: Of the 194 patients surveyed from 29 home medical services, 62 patients (32%) showed signs of ACP participation. Lack of opportunities was the most common reason for not participating in the ACP. In a multivariable-adjusted generalized estimating equation, primary care quality was associated with ACP participation (per 10-point increase, adjusted odds ratio: 1.96, 95% confidence interval: 1.51-2.56). In addition, all domains of the JPCAT-SF were associated with ACP participation. CONCLUSIONS: Patient-centredness in home medical care facilitates the initiation of ACP participation.

Duration of fever and symptoms in influenza-infected children treated with baloxavir marboxil during the 2019-2020 season in Japan and detection of influenza virus with the PA E23K substitution.

Data on the clinical effectiveness of the novel anti-influenza drug baloxavir marboxil (baloxavir) in children remain limited. We conducted an observational study to compare the duration of fever and symptoms between baloxavir- and oseltamivir-treated children infected with influenza A and B. In total, 159 outpatients with influenza A(H1N1)pdm09 or B/Victoria-lineage infections, aged <19 years, during the 2019-2020 influenza season in Japan were enrolled and assessed the duration of fever and symptoms using the Kaplan-Meier method and a multivariate Cox proportional hazard regression model. Polymerase acidic (PA) variants were examined before and after baloxavir treatment. In the multivariable analysis, the duration of fever and symptoms was unaltered between the A(H1N1)pdm09 (n = 116) and B/Victoria-lineage (n = 43) groups. Conversely, the fever duration was marginally longer in the oseltamivir-treated group (n = 59) than in the baloxavir group (n = 100) (hazard ratio (HR) = 0.67, p = 0.05); however, the duration of symptoms was unaltered between the two groups (HR = 0.74, p = 0.11). No patient presented PA reduced susceptibility marker(s) before baloxavir treatment in the analyzed groups. The PA/E23K variant was detected in one case (1.5%, 1/66) of A(H1N1)pdm09 after baloxavir treatment. One case (2.0%, 1/50) of A(H1N1)pdm09 with an N295S substitution in neuraminidase was detected following oseltamivir treatment. These results suggested that the duration of fever was likely to be shorter with baloxavir than with oseltamivir, but the difference between influenza A (H1N1)pdm09 and B/Victoria-lineage was unclear. It is important to continue evaluating the clinical effectiveness of baloxavir and monitoring its drug susceptibility to the influenza virus.

Development of cycling probe based real-time PCR methodology for influenza A viruses possessing the PA/I38T amino acid substitution associated with reduced baloxavir susceptibility.

Baloxavir marboxil has been used for influenza treatment since March 2018 in Japan. After baloxavir treatment, the most frequently detected substitution is Ile38Thr in polymerase acidic protein (PA/I38T), and this substitution reduces baloxavir susceptibility in influenza A viruses. To rapidly investigate the frequency of PA/I38T in influenza A (H1N1)pdm09 and A (H3N2) viruses in clinical samples, we established a rapid real-time system to detect single nucleotide polymorphisms in PA, using cycling probe real-time PCR. We designed two sets of probes that were labeled with either 6-carboxyfluorescein (FAM) or 6-carboxy-X-rhodamine (ROX) to identify PA/I38 (wild type strain) or PA/I38T, respectively. The established cycling probe real-time PCR system showed a dynamic linear range of 101 to 106 copies with high sensitivity in plasmid DNA controls. This real-time PCR system discriminated between PA/I38T and wild type viruses well. During the 2018/19 season, 377 influenza A-positive clinical samples were collected in Japan before antiviral treatment. Using our cycling probe real-time PCR system, we detected no (0/129, 0.0%) influenza A (H1N1)pdm09 viruses with PA/I38T substitutions and four A (H3N2) (4/229, 1.7%) with PA/I38T substitution prior to treatment. In addition, we found PA/I38T variant in siblings who did not received baloxavir treatment during an infection caused by A (H3N2) that afflicted the entire family. Although human-to-human transmission of PA/I38T variant may have occurred in a closed environment, the prevalence of this variant in influenza A viruses was still limited. Our cycling probe-PCR system is thus useful for antiviral surveillance of influenza A viruses possessing PA/I38T.

Validating care-needs level against self-reported measures of functioning, disability and sarcopenia among Japanese patients receiving home medical care: The Zaitaku Evaluative Initiatives and Outcome Study.

AIM: This study aimed to examine the validity of the care-needs levels classified in Japan's long-term care insurance system (LTCI-CNLs) when compared with patients' self-perceived functioning, disability and physical performance among patients receiving home medical care. METHODS: This was a multicenter cross-sectional study in Japan. Patients who were receiving continuous home medical care and who could respond to the questionnaire were enrolled in this study. In addition to the LTCI-CNLs, the 12-item version of the World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) and the SARC-F were used to measure functioning, disability and physical performance (sarcopenia). In addition, correlations and associations of the LTCI-CNLs with the WHODAS 2.0 and SARC-F were analyzed using Spearman correlations and linear mixed models. RESULTS: Data from 181 patients were included in the analyses. The LTCI-CNLs varied, ranging from support level 1 (5.5%) to care-needs level 5 (10.5%), with care-needs level 2 being the most prevalent (24.9%). Moderate correlations of the LTCI-CNLs with the WHODAS 2.0 and SARC-F were found (ρ = 0.58 and 0.44, respectively). Although WHODAS 2.0 and SARC-F scores varied within each LTCI-CNL, predicted WHODAS 2.0 and SARC-F scores increased as LTCI-CNL increased. Dementia was not associated with WHODAS 2.0 or SARC-F. CONCLUSIONS: The LTCI-CNLs was associated with self-reported functioning, disability and physical performance among home medical care patients. Future studies can use the LTCI-CNLs as an outcome variable for specific care approaches or as a proxy covariate for casemix status. Geriatr Gerontol Int 2021; 21: 229-237.

Changes in Relatives' Perspectives on Quality of Death, Quality of Care, Pain Relief, and Caregiving Burden Before and After a Region-Based Palliative Care Intervention.

CONTEXT: A region-based palliative care intervention (Outreach Palliative Care Trial of Integrated Regional Model Study) increased home death, access to specialist palliative care, quality of care, and quality of death and dying. OBJECTIVES: The objective of this study was to examine changes in palliative care outcomes in different care settings (hospitals, palliative care units, and home) and obtain insights into how to improve region-level palliative care. METHODS: The intervention program was implemented from April 2008 to March 2011. Two bereavement surveys were conducted before and after intervention involving 4228 family caregivers of deceased cancer patients. Family-perceived quality of care (range 1-6), quality of death and dying (1-7), pain relief (1-7), and caregiver burden (1-7) were measured. RESULTS: Response rates were 69% (preintervention) and 66% (postintervention), respectively. Family-perceived quality of care (adjusted mean 4.89, 95% CI 4.54-5.23) and quality of death and dying (4.96, 4.72-5.20) at home were the highest and sustained throughout the study. Palliative care units were at the intermediate level between home and hospitals. In hospitals, both quality of care and quality of death and dying were low at baseline but significantly improved after intervention (quality of care: 4.24, 4.13-4.34 to 4.43, 4.31-4.54, P = 0.002; quality of death and dying: 4.22, 4.09-4.36 to 4.36, 4.22-4.50, P = 0.012). Caregiver burden did not significantly increase after intervention, regardless of place of death. CONCLUSIONS: The dual strategies of transition of place of death to home and improving quality of care in hospitals should be recognized as important targets for improving region-level palliative care.

Association Between Bereaved Families' Sense of Security and Their Experience of Death in Cancer Patients: Cross-Sectional Population-Based Study.

CONTEXT: The sense of security scale was developed to indicate care quality within the community. Bereaved families have perspective to evaluate the quality of the care system. OBJECTIVES: The aim was to examine associations between end-of-life care and sense of security regarding regional cancer care among bereaved families. METHODS: A cross-sectional population-based survey was conducted with families of cancer patients who died in regional areas of Japan. RESULTS: A total of 1046 family caregivers of patients responded to surveys (effective response rate of 65%). In multiple regression analyses, the families' higher age (P < 0.001), home death (P = 0.039), better health status of the family at patients' end of life (P = 0.016), lower caregiving burden (P < 0.001), and elements of perceived good patient death, including being free from physical distress (P < 0.001), trusting the physician (P < 0.001), living in calm circumstances (P = 0.042), and feeling that one's life was fulfilling (P = 0.035), were associated with a higher sense of security. CONCLUSION: Quality of death and lower burden on family caregivers were associated with families' sense of security. This suggests strategies for improving care quality for each patient to improve the sense of security.

The effects of community-wide dissemination of information on perceptions of palliative care, knowledge about opioids, and sense of security among cancer patients, their families, and the general public.

PURPOSE: Prejudices against palliative care are a potential barrier to quality end-of-life care. There have been few large-scale community-wide interventions to distribute appropriate information about palliative care, and no studies have investigated their impact on cancer patients, their families, and the general public. Thus, we conducted a 3-year community intervention and evaluated the effects of distributing such information at the community level, and explored associations among levels of exposure, perceptions, knowledge, and the sense of security achieved. METHODS: Over a period of 3 years, we provided flyers, booklets, posters, and public lectures about palliative care in four regions of Japan, and carried out pre- and post-intervention surveys with repeated cross-sectional samplings of cancer patients (pre 859, post 857), bereaved family members (1110, 1137), and the general public (3984, 1435). The levels of exposure to the provided information were measured by a multiple-choice questionnaire after intervention. Multiple logistic regression analyses were used to estimate multivariable-adjusted odds ratios (ORs) for perceptions of palliative care, knowledge about opioids, and sense of security among the exposure groups. RESULTS: Overall perceptions of palliative care, opioids, and receiving care at home improved significantly among the general public and families, but not among the patients at the community level. However, multiple regression revealed that patients of extensive exposure category had significantly more positive perceptions of palliative care to those of non-exposure category (p = 0.02). The sense of security regarding cancer care of all patients, family members, and the general public improved. Among others, the respondents who reported extensive exposure in the general public and family members scored significantly higher sense of security. CONCLUSION: Our findings indicate that providing palliative care information via small media and lectures in the community is effective in improving perceptions of palliative care and knowledge about opioids among the community dwellers, especially for caregivers of the patients. The acquisition of adequate knowledge about palliative care from various information sources may improve people's sense of security regarding cancer.

Improvements in Physicians' Knowledge, Difficulties, and Self-Reported Practice After a Regional Palliative Care Program.

CONTEXT: Although several studies have explored the effects of regional palliative care programs, no studies have investigated the changes in physician-related outcomes. OBJECTIVES: The primary aims of this study were to: (1) clarify the changes in knowledge, difficulties, and self-reported practice of physicians before and after the intervention, (2) explore the potential associations between the level of physicians' participation in the program and outcomes, and (3) identify the reasons and characteristics of physicians who did not participate in the program. METHODS: As a part of the regional palliative care intervention trial, questionnaires were sent to physicians recruited consecutively to obtain a representative sample of each region. Physician-reported knowledge, difficulty of palliative care, and self-perceived practice were measured using the Palliative Care Knowledge Test, Palliative Care Difficulty Scale, and Palliative Care Self-Reported Practice Scale (PCPS), respectively. The level of their involvement in the program and reason for non-participation were ascertained from self-reported questionnaires. RESULTS: The number of eligible physicians identified was 1870 in pre-intervention and 1763 in post-intervention surveys, and we obtained 911 and 706 responses. Total scores of the Palliative Care Knowledge Test, PCPS, and PCPS were significantly improved after the intervention, with effect sizes of 0.30, 0.52, and 0.17, respectively. Physicians who participated in workshops more frequently were significantly more likely to have better knowledge, less difficulties, and better self-reported practice. CONCLUSION: After the regional palliative care program, there were marked improvements in physicians' knowledge and difficulties. These improvements were associated with the level of physicians' participation in the program.

Place of death and the differences in patient quality of death and dying and caregiver burden.

PURPOSE: To explore the associations between place of death and quality of death and dying and caregiver burden in terminally ill patients with cancer and their families. METHODS: Two bereavement surveys were conducted in October 2008 and October 2011. A total of 2,247 family caregivers of patients with cancer who were deceased responded to the mail surveys (response rate, 67%). Family members reported patient quality of death and dying and caregiver burden by using the Good Death Inventory and Caregiving Consequences Inventory. RESULTS: Patient quality of death and dying was significantly higher at home relative to other places of dying after adjustment for patient and/or family characteristics (adjusted means): 5.0 (95% CI, 4.9 to 5.2) for home, 4.6 (95% CI, 4.5 to 4.7) for palliative care units, and 4.3 (95% CI, 4.2 to 4.4) for hospitals. For all combinations, pairwise P < .001; the size of the difference between home and hospital was moderate (Hedges' g, 0.45). Home was superior to palliative care units or hospitals with respect to "dying in a favorite place," "good relationships with medical staff," "good relationships with family," and "maintaining hope and pleasure" (P < .001 for all combinations of home v palliative care units and home v hospitals). Home death was significantly associated with a lower overall (P = .03) and financial caregiver burden (P = .004) relative to hospital death. CONCLUSION: Dying at home may contribute to achieving good death in terminally ill patients with cancer without causing remarkably increased caregiver burden. Place of death should be regarded as an essential goal in end-of-life care.

Strategies for Development of Palliative Care From the Perspectives of General Population and Health Care Professionals: A Japanese Outreach Palliative Care Trial of Integrated Regional Model Study.

This study primarily aimed to identify future actions required to promote palliative care in Japan. The future actions regarded as effective by the general population were "improve physicians' skill in palliative care" (61%), "create a counseling center for cancer" (61%), and "improve nurses' skill in palliative care" (60%). In contrast, future actions regarded as effective by the health care professionals were "set up a Web site that provides information about cancer" (72%), "promote consultation with specialists in palliative care" (71%), and "open an outpatient department specializing in palliative care" (70%). The results suggest (1) development and maintenance of settings; (2) enhancement of palliative care education and training programs for health care providers; and (3) improvement in distributing information about cancer and regional palliative care resources to the general population.

Does a regional comprehensive palliative care program improve pain in outpatient cancer patients?

CONTEXT: Pain is still a major problem for cancer patients, and the effect of a population-based approach on patients' experience of pain is not fully understood. AIMS: The primary aim of this study was to clarify the changes in pain intensity in outpatients before and after a regional palliative care program. The secondary aim was to clarify the prevalence of patients who had unmet needs for pain treatment and to clarify the reasons for not wanting pain treatment. SUBJECTS AND METHODS: A regional palliative care program was implemented in four regions of Japan. A region-representative sample of metastatic/locally advanced cancer patients in outpatient settings took part in questionnaire surveys before and after the regional intervention. Responses were obtained from 859 from 1,880 and 857 from 2,123 in the preintervention and postintervention surveys, respectively. RESULTS: After a regional palliative care program, neither worst, average, nor least pain levels in outpatients changed significantly. A total of 134 patients (16 %) reported that they needed more pain treatment. There were various reasons for not wanting pain treatment, namely, minimum interference with daily life, general nonpreference for medicines, longstanding symptoms before the diagnosis of cancer, concerns about tolerance and addiction, and experienced neuropsychiatric symptoms under current medications. CONCLUSION: The regional palliative care program failed to demonstrate improvement of the pain intensity of cancer outpatients. One possible interpretation is that they are less likely to be regarded as target populations and that the study population experienced generally well-controlled pain. Future study including patients with more severe pain is needed, but to improve pain levels of cancer outpatients, intensive, patient-directed intervention seems to be more promising than region-based intervention.

Changes in quality of care and quality of life of outpatients with advanced cancer after a regional palliative care intervention program.

CONTEXT: A recent mixed-methods study to evaluate the effects of a comprehensive regional palliative care program, the Japan Outreach Palliative Care Trial of the Integrated Model study, achieved broad positive outcomes at a regional level. This is a secondary analysis of patient outcomes. OBJECTIVES: The primary aims were to explore: 1) the changes in domains of patient-reported quality of care and quality of life after interventions, and 2) the changes in quality of care and quality of life of patients with different characteristics (i.e., performance status, age, and anticancer treatment). METHODS: A region-representative sample of metastatic/locally advanced cancer patients in outpatient settings participated in questionnaire surveys before and after regional intervention. Responses were obtained from 859 of 1880 and 857 of 2123 in the pre- and postintervention surveys, respectively. RESULTS: All subdomain scores of the quality of care, except for help with decision making, significantly improved in the postintervention survey. The percentages of the patients who reported that improvement was necessary decreased from 13% to 5.0%. Although there were no or only a marginally significant difference in total and subdomain scores of quality of life between preintervention and postintervention surveys, the subgroups of patients with a poor performance status and those receiving no anticancer treatment achieved a significant improvement in the quality of life. CONCLUSION: Although average changes in patient-reported outcomes were relatively small in the total sample of patients, the intervention seemed to provide tangible benefits for the patients with poor general conditions. A future regional intervention trial should include patient outcomes in those with a poor general condition to evaluate the net effects of the program.

Regional medical professionals' confidence in providing palliative care, associated difficulties and availability of specialized palliative care services in Japan.

BACKGROUND: Although confidence in providing palliative care services is an essential component of providing such care, factors relating to this have not been investigated in Japan. OBJECTIVE: This study aimed to explore confidence in the ability to provide palliative care and associated difficulties and to explore correlations between these variables. Design A cross-sectional mail survey of medical doctors and registered nurses in Japan was performed as part of a regional intervention trial: the Outreach Palliative Care Trial of Integrated Regional Model study. Subjects Questionnaires were sent to 7905 medical professionals, and 409 hospital doctors, 235 general practitioners, 2160 hospital nurses and 115 home visiting nurses completed them. RESULTS: Confidence in providing palliative care was low and difficulties frequent for all types of medical professionals assessed. In particular, only 8-24% of them, depending on category, agreed to 'having adequate knowledge and skills regarding cancer pain management'. In particular, 55-80% of medical professionals acknowledged difficulty with 'alleviation of cancer pain'. Multiple regression analysis revealed that confidence was positively correlated with the amount of relevant experience and, for medical doctors, with 'prescriptions of opioids (per year)'. Moreover, difficulties were negatively correlated with the amount of relevant clinical experience. CONCLUSIONS: Effective strategies for developing regional palliative care programs include basic education of medical professionals on management of cancer-related pain (especially regarding opioids) and other symptoms.

How and why did a regional palliative care program lead to changes in a region? A qualitative analysis of the Japan OPTIM study.

CONTEXT: Improving palliative care is one of the major issues throughout the world. OBJECTIVES: The primary aim of this study was to explore how and why a regional palliative care program led to changes in a region. METHODS: As part of a nationwide mixed-methods study of a regional palliative care program, a qualitative study was performed with 101 health care professionals involved in the implementation of the program. In-depth interviews were done, focusing on perceived changes and the perceived reasons for the changes. We used thematic analyses. RESULTS: Seven themes were identified as follows: 1) improved communication and cooperation among regional health care professionals; 2) increased confidence in the system to care for cancer patients at home; 3) improved knowledge/skills, practice, and perception of palliative care; 4) contribution to self-growth; 5) wide variability in perceived changes in the knowledge and perception of patients, family members, and the general public; 6) wide variability in the perceived regionwide effects of the project; and 7) unresolved issues. Participants emphasized improved communication and cooperation among regional health care professionals and stated a variety of ways of how communication and cooperation influenced daily practice. The main reasons for changes included regionwide interdisciplinary conferences and informal interactions at a variety of meetings. CONCLUSION: This study advances understanding of how the regional palliative care program created a change in the region. The findings are useful for developing a conceptual framework and identifying key interventions to improve regional palliative care for clinicians, researchers, and policy makers.

A population-based survey on perceptions of opioid treatment and palliative care units: OPTIM study.

This study aimed to clarify the general public's perceptions of opioids and palliative care units (PCUs) and explore factors related to such perceptions. A cross-sectional, anonymous questionnaire was administered to 8000 people. Although a majority agreed with positive perceptions of opioids and PCUs, some also agreed with negative perceptions, such as opioids are addictive and shorten life (28% and 27%, respectively). Multiregression analyses revealed that respondents with a better knowledge of PCUs had higher positive perceptions than those without such knowledge (P <.001). The higher positive perceptions were associated with a higher sense of security regarding regional cancer care (P < .001). Providing the general public with adequate knowledge about palliative care may improve perceptions of palliative care and the sense of security.

Exploring the perceived changes and the reasons why expected outcomes were not obtained in individual levels in a successful regional palliative care intervention trial: an analysis for interpretations.

CONTEXT: The Japan Outreach Palliative Care Trial of Integrated Model (OPTIM) study, a mixed-methods study to evaluate the effects of a comprehensive regional palliative care program, revealed that the program provided broad positive outcomes at the regional level: increased home death, palliative care use, patient- and family-reported qualities of care, and health care professionals' difficulties. Not all participants however obtained positive outcomes and thus exploring the reasons why expected outcomes were observed in individual levels could be of value. AIMS: The primary aims were to explore why expected outcomes were not obtained in individual participants, and the perceived changes in daily practices of physicians and nurses were explored. SUBJECTS AND METHODS: Postintervention questionnaire survey on 857 patients, 1,137 bereaved family members, 706 physicians, and 2,236 nurses were analyzed. RESULTS: The reasons for not achieving home deaths included unexpected rapid deterioration, caregivers unavailable, concerns about adequate responses to sudden changes, and physical symptoms uncontrolled, while lack of physician availability at home and lack of information from physicians were less frequently reported. The reasons for not receiving specialized palliative care services were the lack of recommendations from physicians and no information about palliative care services. The reason for evaluating the quality of palliative care as not high was that clinicians tried to relieve symptoms, but there were limited effects and insufficient time. Many physicians and nurses reported that they became more aware of palliative care, that the availability of palliative care specialists and knowledge about palliative care improved, and that they cooperated with other regional health care providers more easily. CONCLUSION: The OPTIM study seemed to succeed in optimizing physician availability at home, improves physician information about home care, achieved maximum efforts to relieve patient distress by clinicians, and increased communication among regional health care professionals. To achieve further better outcomes, multiple interventions to the health care system to be performed on the basis of a comprehensive regional palliative care program are proposed.

Effects of a programme of interventions on regional comprehensive palliative care for patients with cancer: a mixed-methods study.

BACKGROUND: Improvement of palliative care is an important public health issue, but knowledge about how to deliver palliative care throughout a region remains inadequate. We used surveys and in-depth interviews to assess changes in the quality of palliative care after regional interventions and to gain insights for improvement of palliative care at a regional level. METHODS: In this mixed-methods study, a comprehensive programme of interventions for regional palliative care for patients with cancer was implemented from April 1, 2008, to March 31, 2011 in Tsuruoka, Kashiwa, Hamamatsu, and Nagasaki in Japan. Interventions included education, specialist support, and networking. We surveyed patients, bereaved family members, physicians, and nurses before and after the interventions were introduced. We also did qualitative interviews with health-care professionals after the interventions were introduced. Primary endpoints were numbers of home deaths, coverage of specialist services, and patient-reported and family-reported qualities of care. This trial is registered with UMIN Clinical Trial Registry, Japan (UMIN000001274). FINDINGS: 859 patients, 1110 bereaved family members, 911 physicians, and 2378 nurses provided analysable preintervention surveys; 857 patients, 1137 bereaved family members, 706 physicians, and 2236 nurses provided analysable postintervention surveys. Proportions of home deaths increased significantly, from 348 of 5147 (6.76%) before the intervention programme to 581 of 5546 (10.48%) after the intervention programme (p<0.0001). Furthermore, 194 of 221 (87.78%) family members of patients who died at home answered that these patients had wanted to die at home. The ratio of patients who received palliative care services to all patients who died of cancer increased significantly (from 0.31 to 0.50; p<0.0001). The patient-reported (effect size 0.14; adjusted p=0.0027) and family-reported (0.23; p<0.0001) qualities of care were significantly better after interventions than before interventions. Physician-reported and nurse-reported difficulties decreased significantly after the introduction of the interventions. Qualitative interviews showed improved communication and cooperation between health-care professionals because of greater opportunities for interactions at various levels. INTERPRETATION: A regional programme of interventions could improve the quality of palliative care. Improvement of communication between health-care professionals is key to improvement of services. FUNDING: Third Term Comprehensive Control Research for Cancer Health and Labor Sciences Research Grants of the Ministry of Health, Labour and Welfare of Japan.

Pain intensity, quality of life, quality of palliative care, and satisfaction in outpatients with metastatic or recurrent cancer: a Japanese, nationwide, region-based, multicenter survey.

CONTEXT: Increasing numbers of patients with advanced cancer are receiving anticancer and/or palliative treatment in outpatient settings, and palliative care for outpatients with advanced cancer is being recognized as one of the most important areas for comprehensive cancer treatment. OBJECTIVES: The aim of this study was to evaluate pain intensity, quality of life, quality of palliative care, and satisfaction reported by outpatients with advanced cancer. METHODS: Questionnaires were sent to 1493 consecutive outpatients with metastatic or recurrent cancer from four regions in Japan; 859 responses were analyzed (58%). Questionnaires included the Brief Pain Inventory, Good Death Inventory, Care Evaluation Scale, and a six-point satisfaction scale. RESULTS: Approximately 20% of the patients reported moderate to severe pain. Whereas more than 70% agreed or strongly agreed with "good relationship with medical staff" and "being respected as an individual," less than 60% agreed or strongly agreed with "free from physical distress," "free from emotional distress," "maintaining hope," and "fulfillment at life's completion"; 54% reported some agreement with "feel a burden to others." About 20% reported that improvement is necessary in physical care by physicians, physical care by nurses, psycho-existential care, help with decision making, and coordination/consistency of care; 13% reported some levels of dissatisfaction. CONCLUSION: A considerable number of outpatients with metastatic or recurrent cancer experienced pain, physical symptoms, emotional distress, and existential suffering, and advocated improvements in palliative care across multiple areas.