Symptom burden, service use and care dissatisfaction among older adults with cancer, cardiovascular disease, respiratory disease, dementia and neurological disease during the last 3 months before death: A pooled analysis of mortality follow-back surveys.

BACKGROUND: Variation in the provision of care and outcomes in the last months of life by cancer and non-cancer conditions is poorly understood. AIMS: (1) To describe patient conditions, symptom burden, practical problems, service use and dissatisfaction with end-of-life care for older adults based on the cause of death. (2) To explore factors related to these variables focussing on the causes of death. DESIGN: Secondary analysis of pooled data using cross-sectional mortality follow-back surveys from three studies: QUALYCARE; OPTCare Elderly; and International Access, Right, and Empowerment 1. SETTING/PARTICIPANTS: Data reported by bereaved relatives of people aged ⩾75 years who died of cancer, cardiovascular disease, respiratory disease, dementia or neurological disease. RESULTS: The pooled dataset contained 885 responses. Overall, service use and circumstances surrounding death differed significantly across causes of death. Bereaved relatives reported symptom severity from moderate to overwhelming in over 30% of cases for all causes of death. Across all causes of death, 28%-38% of bereaved relatives reported some level of dissatisfaction with care. Patients with cardiovascular disease and dementia experienced lower symptom burden and dissatisfaction than those with cancer. The absence of a reliable key health professional was consistently associated with higher symptom burden (p = 0.002), practical problems (p = 0.001) and dissatisfaction with care (p = 0.001). CONCLUSIONS: We showed different trajectories towards death depending on cause. Improving symptom burden and satisfaction in patients at the end-of-life is challenging, and the presence of a reliable key health professional may be helpful.

Development of a short form of the Japanese version of the Caregiver Reaction Assessment (CRA-J-10) among informal caregivers of older adults.

AIM: To support informal caregivers, a simple assessment tool capturing the multidimensional nature of caregiving experiences, including negative and positive aspects, is required. We developed a short form of the Japanese version of the Caregiver Reaction Assessment (CRA-J), a multidimensional assessment scale for caregiver experiences. METHODS: The internet survey involved 934 Japanese informal caregivers aged 20-79 years (mean age = 58.8 years; 50.2% women) who completed questionnaires, including the CRA-J 18 items (CRA-J-18), consisting of five domains, such as impacts on schedule and finances and positive experiences of caregiving. A 10-item short version of the CRA-J (CRA-J-10; 0-50 points), which was prepared by selecting the two items with the highest factor loadings from each domain, was tested for model fit by confirmatory factor analysis (CFA) and was analyzed for correlations with the CRA-J-18, Zarit Burden Interview (ZBI), Positive Aspects of Caregiving Scale (PACS), Patient Health Questionnaire-9 (PHQ-9), and WHO-Five Well-Being Index (WHO-5). The area under the curve (AUC) in the receiver operating characteristic was evaluated as discriminability for depressive symptoms (PHQ-9 ≥ 10 points). RESULTS: The CFA indicated a good model fit in the CRA-J-10. The CRA-J-10 correlated well with the CRA-J-18 and other variables (CRA-J-18, r = 0.970; ZBI, r = 0.747; PACS, r = -0.467; PHQ-9, r = 0.582; WHO-5, r = -0.588) and showed good discriminant performance for the presence of depressive symptoms (AUC = 0.793, 95% confidence interval = 0.762-0.823). CONCLUSIONS: The CRA-J-10 allows a simple assessment of caregiver experiences, helping support informal caregivers. Geriatr Gerontol Int 2024; 24: 290-296.

Routine patient assessment and the use of patient-reported outcomes in specialized palliative care in Japan.

BACKGROUND: Discrepancies in symptom assessment between providers and patients are reported in cancer care, and the use of patient-reported outcome measures (PROMs) has been recommended for patients receiving palliative care. However, the status of the routine use of PROMs in palliative care in Japan is presently unclear. Therefore, this study aimed to clarify this complex question. To this end, we administered a questionnaire survey either online or via telephone interviews (questionnaire: sent to 427 designated cancer hospitals, 423 palliative care units [PCUs], and 197 home hospices; interviews: conducted at 13 designated cancer hospitals, nine PCUs, and two home hospices). RESULTS: Questionnaires were returned from 458 institutions (44% response rate). We found that 35 palliative care teams (PCTs, 15%), 66 outpatient palliative care services (29%), 24 PCUs (11%) and one (5%) home hospice routinely used PROMs. The most frequently implemented instrument was the Comprehensive Care Needs Survey questionnaire. Moreover, 99 institutions (92%) that routinely used PROMs responded these instruments as useful in relieving patients' symptoms; and moreover, the response rate in regard to usefulness in symptom management was higher than that of institutions that did not routinely use PROMs (p = 0.002); > 50% of the institutions that routinely used PROMs stated that use of these instruments was influenced by disease progression and patients' cognitive function. Moreover, 24 institutions agreed to be interviewed, and interviews demonstrated the benefits of and the barriers to the implementation of PROMs. Effective methods used in the implementation of PROMs were introduced as efforts to reduce the burden placed on patients and to promote healthcare providers' education in the use of PROMs. CONCLUSIONS: This survey quantified the status of the routine use of PROMs within specialized palliative care in Japan, revealed barriers to wider PROM use, and identified needed innovations. Only 108 institutions (24%) routinely used PROMs within specialized palliative care. Based on the results of the study, it is necessary to carefully consider the usefulness of PROs in clinical palliative care, perform careful selection of PROMs according to the patient's condition, and evaluate how specifically to introduce and operate PROMs.

Influence of financial burden on withdrawal or change of cancer treatment in Japan: results of a bereavement survey.

PURPOSE: This study aimed to examine the effect of financial burden of cancer treatment from diagnosis to end-of-life on treatment withdrawal or change in Japan. METHODS: This study was part of a nationwide survey of bereaved family members of cancer patients in Japan (J-HOPE2016 study). Questions regarding withdrawal or change of cancer treatment (stratified according to whether the treatment was recommended by physicians or based on the patients' request), financial difficulties in coping with cancer treatment expenses, and the participants' socioeconomic background were asked. Descriptive analyses were performed, and logistic regression was used to examine the factors related to withdrawal or change of cancer treatment. RESULTS: In total, 510 (60%) questionnaires were returned. Approximately 7.5% of participants reported withdrawal or change of cancer treatment for financial reasons. Financial difficulties in coping with cancer treatment expenses such as using up all or a portion of one's savings (OR = 2.14, 95% CI = 1.14-4.04, p = 0.018/ OR = 3.45, 95% CI = 1.52-7.81, p = 0.003) and subjective financial burden (OR = 2.54, 95% CI = 1.25-5.14, p = 0.010/OR = 3.89, 95% CI = 1.68-9.00, p = 0.002) were significantly related to withdrawal or change of cancer treatment (recommended by physicians/based on patient request). CONCLUSION: Fewer participants reported withdrawal or change of cancer treatment than in previous studies, which might reflect the characteristics of the Japanese healthcare system. However, there are patients in Japan who withdraw or change cancer treatment for financial reasons. Medical staff should consider financial toxicity as a serious side effect and assist patients in their decision-making regarding treatment while taking into account their socioeconomic backgrounds.

Care needs level in long-term care insurance system and family caregivers' self-perceived time-dependent burden in patients with home palliative care for cancer: a cross-sectional study.

PURPOSE: Although home care improves patients' quality of life (QOL), several studies have suggested that home care lowers the QOL of family caregivers and decreases their mortality. To alleviate the deleterious impact of home care on caregivers, the major burdens on caregivers and the clinical characteristics of the caregivers vulnerable to the major burden needs to be clarified. METHOD: A survey questionnaire was distributed to 710 family caregivers of patients with cancer in Japan, and 342 valid responses were obtained (valid response rate: 48.2%). The Burden Index of Caregivers was used to identify the major burden on caregivers. To assess the associations of the patients' care needs level and other clinically relevant factors with the major burden, a multivariable-adjusted logistic regression model was used. RESULTS: The time-dependent burden was identified as a major burden. An adjusted model showed a nonlinear association between the care needs level and the time-dependent burden, in which the caregivers of the patients who required moderate care needs level had the highest time-dependent burden [adjusted odds ratio of none, mild, moderate, and severe care needs levels: 0.50 (95% confidence interval 0.07-2.12), 1.08 (0.43-2.57), 1.87 (1.01-3.52), and 1.00 (reference), respectively]. Additionally, older patients and younger caregivers were significantly associated with a time-dependent burden. CONCLUSION: The time-dependent burden was highest in caregivers at the moderate care needs level and younger caregivers. An imbalance between the demand and supply of care services may be improved by considering the clinical characteristics of both patients and caregivers.

Effects of financial status on major depressive disorder and complicated grief among bereaved family members of patients with cancer.

OBJECTIVE: To examine current financial status, changes before and after bereavement, and their effects on possible major depressive disorder (MDD) and complicated grief (CG) among bereaved family members of patients with cancer. METHODS: We conducted a nationwide cross-sectional questionnaire survey on 787 bereaved family members of patients with cancer in 71 palliative care institutions in Japan from May to July 2016. The survey assessed perceived level of concern regarding current financial status and whether it changed after bereavement. We also collected information on demographic factors and assessed the possible MDD and CG using the Patient Health Questionnaire-9 and Brief Grief Questionnaire, respectively. We then conducted bivariate analysis to examine the relationship between these factors and financial status. RESULTS: A total of 491 (62%) questionnaires were returned. The majority of the participants (n = 382, 78%) reported having no or mild concerns about their livelihood, whereas 19% (n = 95) had moderate to severe concerns. Regarding the change in financial status after bereavement, 7% (n = 35) reported improvement, 28% (n = 131) reported worsening, and 65% (n = 308) reported no change. The prevalences of possible MDD and CG were 22% (n = 108) and 9% (n = 41), respectively, and were significantly lower among participants with less concern regarding their livelihood and whose financial status had not changed after bereavement (both p < 0.05). CONCLUSIONS: About one-fifth of the bereaved family members reported financial difficulties to some extent; these were significantly associated with MDD and CG. These findings provide evidence of the need for psychosocial support including financial consultation for bereaved family members.

Differences in aggressive treatments during the actively dying phase in patients with cancer and heart disease: an exploratory study using the sampling dataset of the National Database of Health Insurance Claims.

Despite the recent attention given to palliative care for patients with heart disease, data about the treatments in their actively dying phase are not sufficiently elaborated. In this study, we used the sampling dataset of a national database to compare the aggressive treatments performed in patients with cancer and those with heart disease. We only included patients deceased in January or July from 2011 to 2015, using the Diagnosis Procedure Combination sampling dataset of the National Database of Health Insurance Claims and Specific Health Checkups of Japan (NDB). Patients who were discharged within the first 10 days of each month were excluded. We explored and compared aggressive treatments such as cardiopulmonary resuscitation and intensive care utilization, performed within seven days before death in cancer patients. We used 10,637 (0.4% of the dataset) deceased target population (40.0% female), with 7844 (73.7%) and 2793 (26.3%) being the proportion of cancer and heart disease patients, respectively. Aggressive treatments and procedures such as cardiopulmonary resuscitation (18.4%), intensive care utilization (5.4%), use of inotropes (43.4%), use of respirators (29.1%), and dialysis (4.5%) were frequently observed in heart disease patients. These associations remained after adjusting for age, sex, and disease severity. This study indicates the possible use of an NDB sampling dataset to evaluate the aggressive treatments and procedures in the actively dying phase in both heart disease and cancer patients. Our results showed the differences in aggressive treatment strategies in the actively dying phase between patients with cancer and those with heart disease.

Effectiveness of spiritual care using spiritual pain assessment sheet for advanced cancer patients: A pilot non-randomized controlled trial.

OBJECTIVE: To obtain preliminary knowledge to design a randomized controlled trial to clarify the effects of spiritual care using the Spiritual Pain Assessment Sheet (SpiPas). METHOD: The study was designed as a nonrandomized controlled trial. The study took place between January 2015 and July 2015 in a hematology and oncology ward and two palliative care units in Japan. Among 54 eligible patients with advanced cancer, 46 were recruited (24 in the control group vs. 22 in the intervention group). The intervention group received spiritual care using SpiPas and usual care; the control group received usual care. The primary outcome was the Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp). The secondary outcomes were the Hospital Anxiety and Depression Scale (HADS) and Comprehensive Quality of Life Outcome (CoQoLo).ResultA total of 33 (72%) and 23 (50%) patients completed 2- and 3-week follow-up evaluations, respectively. The differences in the changes during 2 weeks in total scores of FACIT-Sp and HADS were significant (95% confidence intervals, 3.65, 14.4, p < 0.01; -11.2 to -1.09, p = .02, respectively). No significant changes were observed in the total score of CoQoLo.Significance of resultsSpiritual care using the SpiPas might be useful for improving patient spiritual well-being. This controlled clinical trial could be performed and a future clinical trial is promising if outcomes are obtained within 2 weeks.

Acculturation and Perceptions of a Good Death Among Japanese Americans and Japanese Living in the U.S.

CONTEXT: Acculturation is the phenomenon of the attitudinal changes of individuals who come into continuous contact with another culture. Despite the long history of Japanese immigration to America, little is known about the impact of acculturation on perceptions of a good death. OBJECTIVES: To examine differences in perceptions of a good cancer death among Japanese Americans (JA/A), Japanese living in America (J/A), and the Japanese living in Japan (J/J). METHODS: We administered surveys among JA/A and J/A and used historical J/J data for reference. Primary endpoint was the proportion of respondents who expressed the necessity of core and optional items of the Good Death Inventory. Group differences ≥20% were deemed clinically important. RESULTS: In total, 441 survey responses in America and 2548 in Japan were obtained. More than 80% of respondents consistently considered nine of 10 core items necessary without significant group differences. No core item reached a ≥20% group difference. Three of the eight optional items reached ≥20% group difference: fighting against disease until one's last moment (49%, P < 0.0001; 52%, P < 0.0001; and 73% in JA/A, J/A, and J/J, respectively), knowing what to expect about one's condition in the future (83%, P < 0.0001; 80%, P < 0.0001; and 58%, respectively), and having faith (64%, P = 0.0548; 43%, P = 0.0127; and 38%, respectively). CONCLUSION: Although most core items of a good death were preserved throughout the levels of acculturation, perceptions of some optional items shifted away from Japanese attitudes as individuals became more acculturated. Understanding of different levels of acculturation may help clinicians provide culturally sensitive end-of-life care.

Decision Making Regarding the Place of End-of-Life Cancer Care: The Burden on Bereaved Families and Related Factors.

CONTEXT: Decision making regarding the place of end-of-life (EOL) care is an important issue for patients with terminal cancer and their families. It often requires surrogate decision making, which can be a burden on families. OBJECTIVES: To explore the burden on the family of patients dying from cancer related to the decisions they made about the place of EOL care and investigate the factors affecting this burden. METHODS: This was a cross-sectional mail survey using a self-administered questionnaire. Participants were 700 bereaved family members of patients with cancer from 133 palliative care units in Japan. The questionnaire covered decisional burdens, depression, grief, and the decision-making process. RESULTS: Participants experienced emotional pressure as the highest burden. Participants with a high decisional burden reported significantly higher scores for depression and grief (both P < 0.001). Multiple regression analyses revealed that higher burden was associated with selecting a place of EOL care that differed from that desired by participants (P < 0.001) and patients (P = 0.034), decision making without knowing the patient's wishes and values (P < 0.001) and without participants sharing their wishes and values with the patient's doctors and/or nurses (P = 0.022), and making the decision because of a due date for discharge from a former facility or hospital (P = 0.005). CONCLUSION: Decision making regarding the place of EOL care was recalled as burdensome for family decision makers. An early decision-making process that incorporates sharing patients' and family members' values that are relevant to the desired place of EOL care is important.

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.

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.

Anxiety in disease-free breast cancer patients might be alleviated by provision of psychological support, not of information.

OBJECTIVE: This study investigates the prevalence of clinical anxiety, the possible impact of patients' anxiety on quality of life and the association between their anxiety levels and patients' perceived needs. METHODS: Randomly selected disease-free patients with breast cancer who survived >2 years were invited to participate in the study. The participants were asked to complete the Hospital Anxiety and Depression Scale, the European Organization for Research and Treatment of Cancer QLQ-C 30 and the Short-form Supportive Care Needs Survey questionnaire, which covers five domains of need (health system and information, psychological, physical, care and support and sexuality needs). RESULTS: Complete data were available for 146 of the patients, and 14% of them suffered from clinical anxiety. Anxiety score had a statistically significant correlation with all domains of quality-of-life measures. The only perceived need that was significantly associated with anxiety was the psychological domain. CONCLUSIONS: Not negligible patients may suffer from clinical anxiety >2 years after their initial cancer diagnoses. Anxiety can impact on patients' quality of life, and unmet psychological needs are expected to increase anxiety levels. Management of anxiety could be one of the key components to improving the quality of life for breast cancer survivors and that reducing their unmet psychological needs may contribute to alleviating anxiety.

A Nationwide Survey of Quality of End-of-Life Cancer Care in Designated Cancer Centers, Inpatient Palliative Care Units, and Home Hospices in Japan: The J-HOPE Study.

CONTEXT: End-of-life (EOL) cancer care in general hospitals and home care has not previously been evaluated in Japan. OBJECTIVES: This study aimed to evaluate EOL cancer care from the perspective of bereaved family members in nationwide designated cancer centers, inpatient palliative care units (PCUs), and home hospices in Japan. METHODS: We conducted a cross-sectional, anonymous, self-report questionnaire survey for bereaved family members of cancer patients in March 2008 for 56 designated cancer centers and in June 2007 for 100 PCUs and 14 home hospices. Outcomes were overall care satisfaction, structure and process of care (Care Evaluation Scale), and achievement of a good death (Good Death Inventory). RESULTS: In designated cancer centers, PCUs, and home hospices, 2794 (response rate 59%), 5312 (response rate 69%), and 292 (response rate 67%) bereaved family members participated, respectively. Mean scores for overall care satisfaction were high for all places of death, at 4.3 ± 1.2 for designated cancer centers, 5.0 ± 1.2 for PCUs, and 5.0 ± 1.0 for home hospices. Designated cancer centers showed significantly lower ratings than PCUs and home hospices for structure and process of care and achievement of a good death (P = 0.0001 each). Home hospices were rated significantly higher than PCUs for achievement of a good death (P = 0.0001). CONCLUSION: The main findings of this study were: (1) overall, bereaved family members were satisfied with end-of-life care in all three places of death; (2) designated cancer centers were inferior to PCUs and home hospices and had more room for improvement; and 3) home hospices were rated higher than PCUs for achieving a good death, although home hospices remain uncommon in Japan.

Prevalence, associated factors and source of support concerning supportive care needs among Japanese cancer survivors.

BACKGROUND: The current study aimed to describe cancer survivors' supportive care needs in Japan, to identify associated factors of unmet needs, and to describe the source of support that are preferred and actually used by cancer survivors. METHODS: Using a web-based questionnaire, we examined unmet supportive needs and its associated factors among 628 adult Japanese cancer survivors. The questionnaire comprised 16 items representing five domains (medical-psychological, financial, social-spiritual, sexual, and physical needs). RESULTS: Prevalence of unmet need ranged from 5 to 18%, depending on different domains. The prevalence was high in medical-psychological and financial domains and relatively low in physical and sexual domains. Poor performance status, psychiatric morbidity and low income status were associated with unmet needs of most domains. Most cancer survivors preferred and actually sought support from their family and friends. Financial needs were preferred to be provided by non-medical professionals. Call for peer support was intense, especially for medical-psychological, social-spiritual, and sexual needs; however, peer support was not well-provided. CONCLUSIONS: This study illustrated characteristics of Japanese cancer survivors who are likely to have unmet needs. The study demonstrated need for expanded involvement of non-medical professionals and peer support, especially in the domains of medical-psychological, social-spiritual, financial and sexual needs.

Outcome evaluation of the Palliative care Emphasis program on symptom management and Assessment for Continuous Medical Education: nationwide physician education project for primary palliative care in Japan.

OBJECTIVE: Palliative care is an essential part of medicine, but most physicians have had no formal opportunity to acquire basic skills in palliative care. In Japan, the Palliative care Emphasis program on symptom management and Assessment for Continuous Medical Education (PEACE) was launched to provide formal primary palliative care education for all physicians engaged in cancer care. This study sought to determine whether PEACE could improve physicians' knowledge of, practices in, and difficulties with palliative care. METHODS: In 2011, we conducted questionnaire-based surveys before, just after, and 2 months after completion of the PEACE program in physicians participating in the program at each of 15 designated cancer hospitals in Japan. Knowledge was measured using the palliative care knowledge questionnaire for PEACE (PEACE-Q). Practices and difficulties were evaluated using the Palliative Care self-reported Practice Scale (PCPS) and the Palliative Care Difficulties Scale (PCDS), respectively. RESULTS: Among 223 physicians participating in the program, 85 (38%) answered the follow-up survey. Significant improvements were noted on the PEACE-Q compared with baseline immediately after completion of the program, and this progress was maintained at 2 months (21.7 ± 5.56 versus 29.5 ± 2.10 versus 28.7 ± 3.28, respectively; p < 0.0001). Similarly, significant improvements were noted for total scores on both the PCPS and the PCDS at 2 months after completion of the program (62.1 ± 13.9 versus 69.6 ± 9.94 [p < 0.0001] for the PCPS; 44.4 ± 9.96 versus 39.4 ± 10.7 [p < 0.0001] for the PCDS). CONCLUSIONS: The PEACE education program improved physicians' knowledge of, practices in, and difficulties with palliative care.

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.

Symptom burden and achievement of good death of elderly cancer patients.

BACKGROUND: The aim of this study was to compare the symptom burden and achievement of good death of elderly cancer patients with that of younger patients. METHODS: Secondary analysis of three large databases was performed: (1) 7449 cancer outpatients receiving chemotherapy, (2) 1716 outpatients with metastatic cancer, and (3) 1751 terminally ill cancer patients who died in hospitals or at home. Outcome measures used included the M.D. Anderson Symptom Inventory, Brief Pain Inventory, and Good Death Inventory. RESULTS: In cancer outpatients receiving chemotherapy, older patients reported significantly higher levels of dyspnea and fatigue (lung cancer), emotional distress (breast cancer), and unmet needs regarding information and help with decision making (stomach cancer); however, the intensity of nausea was significantly lower across the four primary tumor sites, and intensity of pain was significantly lower in lung cancer. In outpatients with metastatic cancer, older patients reported lower levels of "maintaining hope and pleasure," "a good relationship with the family," and "independence," while there was no significant difference in the pain intensity. In terminally ill cancer patients, proxy family members reported significantly lower levels of "independence," while they reported significantly lower levels of pain, physical discomfort, and psychological discomfort. CONCLUSIONS: Older cancer patients need at least the same levels of palliative care; while they experienced generally lower levels of nausea and pain, some older patients experienced higher levels of dyspnea, fatigue, emotional distress, need for information, help with decision making, loss of hope and pleasure, and independence.

Which quality of life instruments are preferred by cancer patients in Japan? Comparison of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30 and the Functional Assessment of Cancer Therapy-General.

PURPOSE: We compared two health-related quality of life (HRQOL) instruments used for cancer patients [the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30 (EORTC QLQ-C30) and the Functional Assessment of Cancer Therapy-General (FACT-G)] to identify which instrument cancer patients most preferred. METHODS: Adult cancer patients who had received cancer treatments within the previous 2 years (n = 395) completed both surveys; participants assessed the importance, necessity, and appropriateness of each as an indicator of their quality of life. RESULTS: The patients significantly preferred the FACT-G over the EORTC QLQ-C30 as a more important (effect size (ES) = 0.37, P < 0.001), necessary (ES = 0.18, P < 0.001), and appropriate questionnaire (ES = 0.14, P = 0.005). The subgroups of patients with good performance status, and those who reported low levels of work disruption, significantly preferred the FACT-G more than the other. The corresponding correlation coefficients were the following: physical functioning and well-being subscale, r = 0.65; emotional functioning and well-being subscale, r = 0.60; social functioning and social/family well-being subscale, r = 0.00; and role functioning and functional well-being subscale, r = 0.41. CONCLUSIONS: We recommend using the FACT-G if the performance status of the subject is good, e.g., in outpatient or cancer survivor surveys, based on the observed patient preferences. When performance status is not good, an instrument should be chosen after considering the differences between their scale structures and social domains and based on the availability of disease-specific modules.