An Autopsy Case of Multicentric Castleman Disease Presenting with Severe Jaundice.

A 70-year-old man with multicentric Castleman disease (MCD) was admitted to our hospital with jaundice and ascites. Elevations in his bilirubin and interleukin-6 levels were noted, and computed tomography revealed hepatic atrophy and portal vein and bile duct disorders. Steroid therapy was started for MCD, but he died of hepatic failure. An autopsy revealed that the MCD activity was mild, but advanced fibrosis and cholestasis were observed in the liver. Mild infiltration of interleukin-6-positive plasma cells was noted in the highly fibrotic area of the liver. Although rare, liver and biliary tract damage may be also considered organ disorders of MCD.

Arterial Stiffness Index and Exercise Tolerance in Patients Undergoing Cardiac Rehabilitation.

Arterial stiffness contributes to the development of cardiovascular disease (CVD). However, the relationship between the arterial stiffness and exercise tolerance in CVD patients with preserved ejection fraction (pEF) and those with reduced EF (rEF) is unclear. We enrolled 358 patients who participated in cardiac rehabilitation and underwent cardiopulmonary exercise testing at Juntendo University Hospital. After excluding 195 patients who had undergone open heart surgery and 20 patients with mid-range EF, the patients were divided into pEF (n = 99) and rEF (n = 44) groups. Arterial stiffness was assessed using arterial velocity pulse index (AVI) and arterial pressure volume index (API) at rest. The patients in the pEF group were significantly older and had a higher prevalence of coronary artery disease than the rEF group. The pEF group had significantly lower AVI levels and higher API levels than the rEF group. In the pEF group, the peak oxygen uptake (peak VO2) and the anaerobic threshold was significantly higher than those in the rEF group. The peak VO2 was significantly and negatively correlated with AVI and API in the pEF group (All, P < 0.05), but not in the rEF group. Multivariate linear regression analyses demonstrated that AVI was independently associated with peak VO2 (ß = -0.34, P < 0.05) in the pEF group. In conclusion, AVI may be a useful factor for assessing exercise tolerance, particularly in CVD patients with pEF.

The Clinical Features of Patients with Sarcoidosis and Malignant Diseases in Japan.

Objective Recent studies suggest a significant association between sarcoidosis and malignancy, although the results have remained controversial. The aim of this study is to evaluate the clinical features of patients with sarcoidosis associated with malignant diseases in Japan. Patients We conducted a medical record review of all sarcoidosis patients in Tohoku University Hospital between January 1, 1981, and May 31, 2017. Methods The clinical records and pathology reports for each patient were screened, and the clinical characteristics of malignancies as well as sarcoidosis were reviewed. Results A total of 52 (18.8%) patients with malignancy were identified among 277 patients with sarcoidosis. Among those 52 patients, we identified 62 with malignant diseases. These patients were older and more likely to be women than the remaining 225 (81.2%) sarcoidosis patients without malignancy. The most prevalent malignant disease was breast cancer (14 cases, 22.6%), followed by stomach cancer (8 cases, 12.9%) and lung cancer (7 cases, 11.3%). Among the 14 patients with both sarcoidosis and breast cancer, 8 (57.1%) were diagnosed with breast cancer before sarcoidosis. All of these eight cases had undergone surgical resection of the cancer. Conclusion This study showed a higher incidence of patients with both sarcoidosis and malignancy in Japan than in some western countries. Breast cancer is the most prevalent malignant disease. The high frequency of sarcoidosis after surgical resection of breast cancer may suggest a causative association between malignancy and the development of sarcoidosis.

Cancer Care Evaluation Scale (CCES): measuring the quality of the structure and process of cancer care from the perspective of patients with cancer.

OBJECTIVE: To evaluate the quality of the structure and process of cancer care from the perspective of patients with cancer, we developed a Cancer Care Evaluation Scale. METHODS: Two anonymous online surveys of patients with cancer in Japan were conducted using a convenience sample of 400 adult cancer outpatients. RESULTS: In total, 162 patients participated in the online surveys. Factor analysis revealed that the Cancer Care Evaluation Scale had the following 12 domains: (i) relationship with physician, (ii) relationship with nurse, (iii) physical care by physician, (iv) physical care by nurse, (v) psycho-existential care, (vi) help with decision-making for patients, (vii) coordination and consistency, (viii) environment, (ix) cost, (x) availability, (xi) care for the side effects of cancer treatment by a physician, and (xii) care for the side effects of cancer treatment by a nurse. The Cancer Care Evaluation Scale was correlated with overall care satisfaction (r = 0.75), but not with the quality of life (r = 0.40). In regard to rest-retest reliability, most items showed an intraclass correlation coefficient of 0.7 or higher. CONCLUSION: The validity and reliability of the Cancer Care Evaluation Scale were confirmed, suggesting that this tool is useful for evaluating the quality of cancer care from the perspective of patients with cancer.

Changes in self-reported physical activity and health-related quality of life following 3-month astaxanthin supplementation in patients with heart failure: results from a pilot study.

BACKGROUND: Astaxanthin has a strong antioxidant effect. We recently demonstrated that following 3-month astaxanthin supplementation, cardiac contractility and exercise tolerance improved, possibly through the suppression of oxidative stress in a small pilot study involving patients with heart failure with left ventricular systolic dysfunction. This is a sub-study of our pilot study to investigate whether improvements of selfreported physical activity and health-related quality of life were observed following 3-month astaxanthin supplementation. METHODS: We investigated the changes in physical activity by the Specific Activity Scale score and healthrelated quality of life by physical and mental component summary scores in Short Form-8 at baseline and after 3-month astaxanthin supplementation. RESULTS: Data from 17 patients with heart failure were assessed. Following 3-month astaxanthin supplementation, the Specific Activity Scale score increased from the median of 4.5 (interquartile range, 2.0) to 6.5 (interquartile range, 1.1) metabolic equivalent (P=0.001), and the physical and mental component summary scores increased from 46.1±9.2 to 50.8±6.8 (P=0.015) and from 48.9±9.1 to 53.8±4.8 (P=0.022), respectively. There was a linear relationship of the baseline heart rate, or mental component summary score with the percent change in the Specific Activity Scale score (r=0.523, P=0.031 and r=-0.505, P=0.039, respectively). In addition, there was a direct relationship of ischemic etiology with the percent change in the physical component summary score (r=0.483, P=0.049, respectively). Finally, there was a linear relationship between the percent change in the Specific Activity Scale score and that in the mental component summary score (r=0.595, P=0.012). CONCLUSIONS: Following 3-month astaxanthin supplementation, improvements of the self-reported physical activity level and health-related quality of life in both mental and physical components were observed. In patients with heart failure, those with higher baseline heart rate, ischemic etiology, and poorer baseline health-related quality of life have potentials to have greater improvement of physical activity and/or health-related quality of life.

Prognostic Effect of a Novel Simply Calculated Nutritional Index in Acute Decompensated Heart Failure.

The TCB index (triglycerides × total cholesterol × body weight), a novel simply calculated nutritional index based on serum triglycerides (TGs), serum total cholesterol (TC), and body weight (BW), was recently reported to be a useful prognostic indicator in patients with coronary artery disease. Thus, this study aimed to investigate the relationship between TCBI and long-term mortality in acute decompensated heart failure (ADHF) patients. Patients with a diagnosis of ADHF who were consecutively admitted to the cardiac intensive care unit in our institution from 2007 to 2011 were targeted. TCBI was calculated using the formula TG (mg/dL) × TC (mg/dL) × BW (kg)/1000. Patients were divided into two groups according to the median TCBI value. An association between admission TCBI and mortality was assessed using univariable and multivariable Cox proportional hazard analyses. Overall, 417 eligible patients were enrolled, and 94 (22.5%) patients died during a median follow-up period of 2.2 years. The cumulative survival rate with respect to all-cause, cardiovascular, and cancer-related mortalities was worse in patients with low TCBI than in those with high TCBI. In the multivariable analysis, although TCBI was not associated with cardiovascular and cancer mortalities, the association between TCBI and reduced all-cause mortality (hazard ratio: 0.64, 95% confidence interval: 0.44-0.94, p = 0.024) was observed. We computed net reclassification improvement (NRI) when TCBI or Geriatric Nutritional Risk Index (GNRI) was added on established predictors such as hemoglobin, serum sodium level, and both. TCBI improved discrimination for all-cause mortality (NRI: 0.42, p < 0.001; when added on hemoglobin and serum sodium level). GNRI can improve discrimination for cancer mortality (NRI: 0.96, p = 0.002; when added on hemoglobin and serum sodium level). TCBI, a novel and simply calculated nutritional index, can be useful to stratify patients with ADHF who were at risk for worse long-term overall mortality.

Validity and Reliability of the Dying Care Process and Outcome Scales Before and After Death From the Bereaved Family Members' Perspective.

OBJECTIVE:: There are no instruments evaluating the processes and outcomes of dying care right before and after death. Therefore, we developed and examined the validity and reliability of 2 scales for evaluating dying care processes and outcomes before and after death. METHODS:: A cross-sectional, anonymous questionnaire was administered to bereaved family members of patients with cancer who had died in 5 facilities. We evaluated the Dying Care Process Scale for Bereaved Family Members (DPS-B) and the Dying Care Outcome Scale for Bereaved Family Members (DOS-B) with 345 bereaved family members. RESULTS:: A factor analysis revealed that DPS-B and DOS-B each consisted of 4 subscales. For the DPS-B, they were "symptom management," "respect for the patient's dignity before and after death," "explanation to the family," and "family care." For the DOS-B, they were "peaceful dying process for the patient," "being respected as a person before and after death," "good relationship between the patient and family," and "peaceful dying process for the family." Both DPS-B and DOS-B had sufficient convergent and discriminative validity, sufficient internal consistency (DPS-B: α = 0.91 and subscales' αs = 0.78-0.91; DOS-B: α = 0.91 and subscales' αs = 0.78-0.94), and sufficient test-retest reliability (DPS-B: intraclass correlation coefficient [ICC] of total score = 0.79 and subscales = 0.55-0.79; DOS-B: ICC of total score = 0.88 and subscales = 0.70-0.88). SIGNIFICANCE OF RESULTS:: Both DPS-B and DOS-B are valid and reliable scales for evaluating the dying care processes and outcomes before and after death from the bereaved family members' perspectives.

Development and Validity of the Nursing Care Scale and Nurse's Difficulty Scale in Caring for Dying Patients With Cancer and Their Families in General Hospitals in Japan.

This study develops and examines the validity and reliability of 2 scales, respectively, for evaluating nursing care and the experience of difficulties providing nursing care for dying patients with cancer and their families. A cross-sectional anonymous questionnaire was administered to nursing staff caring for dying patients with cancer and their families in 4 general hospitals and a university hospital in Japan. The instruments assessed were the Nursing Care Scale for Dying Patients and Their Families (NCD) and the Nurse's Difficulty Scale for Dying Patients and Their Families (NDD). Of the 497 questionnaires sent to nurses, 401 responses (80%) were analyzed. Factor analyses revealed that the NCD and NDD consisted of 12 items with 4 subscales: "symptom management," "reassessment of current treatment and nursing care," "explanation to family," and "respect for the patient and family's dignity before and after death." These scales had sufficient convergent and discriminative validity, sufficient internal consistency (α of subscales: NCD, 0.71-0.87; NDD, 0.74-0.93), and sufficient test-retest reliability (intraclass correlation coefficient of subscales: NCD, 0.59-0.81; NDD, 0.67-0.82) to be used as self-assessments and evaluation tools in education programs to improve the quality of nursing care for the dying patients and their families.

Communication Disparity Between the Bereaved and Others: What Hurts Them and What Is Unhelpful? A Nationwide Study of the Cancer Bereaved.

CONTEXT: The importance of communication between the cancer bereaved and others has been emphasized, but little is known about the more problematic aspects of this communication such as "unhelpful communication." OBJECTIVES: The aim of this study was to establish which types of communication are perceived by the bereaved to be unhelpful. METHODS: We conducted a cross-sectional, anonymous, nationwide survey at 103 certified hospice facilities/palliative care units in Japan. RESULTS: A total of 630 (63%) bereaved responded. Over 60% of the bereaved experiencing such communication considered it to be unhelpful, with the most unhelpful communication being "They emphasized the positive aspects of death." Thirteen items related to communication were separated into two factors ("advice for recovery" and "comments on cancer") by factor analysis. "Comments on cancer" were more unhelpful to them and were more often provided by those around them. With regard to "advice for recovery," losing a spouse was a stronger predictor with a higher odds ratio for communication distress than losing a parent (odds ratio, 5.34; 95% CI, 1.63-17.57). CONCLUSION: A number of the bereaved have experienced unhelpful communication regarding advice on dealing with bereavement and cancer. To prevent putting an unnecessary burden on the bereaved with such unhelpful communication, it is essential to understand problematic aspects. Even when people have no intention of hurting the bereaved, some communication may do so. Communication with the bereaved is also a core clinical skill required by health professionals, and further efforts are required to support the grieving process.

Low 1,5-anhydroglucitol levels are associated with long-term cardiac mortality in acute coronary syndrome patients with hemoglobin A1c levels less than 7.0.

BACKGROUND: Diabetes mellitus is considered an important risk factor for cardiovascular diseases. High hemoglobin A1c (HbA1c) levels, which indicate poor glycemic control, have been associated with occurrence of cardiovascular diseases. There are few parameters which can predict cardiovascular risk in patients with well-controlled diabetes. Low 1,5-anhydroglucitol (1,5-AG) levels are considered a clinical marker of postprandial hyperglycemia. We hypothesized that low 1,5-AG levels could predict long-term mortality in acute coronary syndrome (ACS) patients with relatively low HbA1c levels. METHODS: The present study followed a retrospective observational study design. We enrolled 388 consecutive patients with ACS admitted to the cardiac intensive care unit at the Juntendo University Hospital from January 2011 to December 2013. Levels of 1,5-AG were measured immediately before emergency coronary angiography. Patients with early stent thrombosis, no significant coronary artery stenosis, malignancy, liver cirrhosis, a history of gastrectomy, current steroid treatment, moderately to severely reduced kidney function (estimated glomerular filtration rate < 45 ml/min/1.73 m2; chronic kidney disease stage 3B, 4, and 5), HbA1c levels ≥ 7.0%, and those who received sodium glucose co-transporter 2 inhibitor therapy were excluded. RESULTS: During the 46.9-month mean follow-up period, nine patients (4.5%) died of cardiovascular disease. The 1,5-AG level was significantly lower in the cardiac death group compared with that in the survivor group (12.3 ± 5.3 vs. 19.2 ± 7.7 µg/ml, p < 0.01). Kaplan-Meier survival analysis showed that low 1,5-AG levels were associated with cardiac mortality (p = 0.02). Multivariable Cox regression analysis showed that 1,5-AG levels were an independent predictor of cardiac mortality (hazard ratio 0.76; 95% confidence interval 0.41-0.98; p = 0.03). CONCLUSION: Low 1,5-AG levels, which indicate postprandial hyperglycemia, predict long-term cardiac mortality even in ACS patients with HbA1c levels < 7.0%.

Decreased circulating dihomo-gamma-linolenic acid levels are associated with total mortality in patients with acute cardiovascular disease and acute decompensated heart failure.

BACKGROUND: Polyunsaturated fatty acids (PUFAs) have important roles in the pathogenesis of cardiovascular diseases. However, the clinical significance of omega-6 PUFAs in acute cardiovascular disease remains unknown. METHODS: We enrolled 417 consecutive patients with acute cardiovascular disease admitted to the cardiac intensive care unit at Juntendo University Hospital between April 2012 and October 2013. We investigated the association between serum PUFA levels and long-term mortality. Blood samples were collected after an overnight fast, within 24 h of admission. We excluded patients who received eicosapentaenoic acid therapy and those with malignancy, end-stage kidney disease, chronic hepatic disease, and connective tissue disease. RESULTS: Overall, 306 patients (mean age: 66.4 ± 15.0 years) were analysed. During the follow-up period of 2.4 ± 1.2 years, 50 patients (16.3%) died. The dihomo-gamma-linolenic acid (DGLA) levels, arachidonic acid (AA) levels, and DGLA/AA ratio were significantly lower in the nonsurvivor group than in the survivor group (DGLA: 23.2 ± 9.8 vs. 31.5 ± 12.0 µg/ml, AA: 151.1 ± 41.6 vs. 173.3 ± 51.6 µg/ml, and DGLA/AA: 0.16 ± 0.05 vs. 0.19 ± 0.06, all p < 0.01). Kaplan-Meier curves showed that survival rates were significantly higher in the higher DGLA, AA, and DGLA/AA groups than in their lower counterparts (DGLA and AA; p < 0.01, DGLA/AA; p = 0.01), although omega-3 PUFAs were not associated with prognosis. Furthermore, in patients with acute decompensated heart failure (ADHF), survival rates were significantly higher in the higher DGLA, AA, and DGLA/AA groups than in their lower counterparts (DGLA and AA; p < 0.01, DGLA/AA; p = 0.04). However, among patients with acute coronary syndrome, none of the PUFA levels were associated with prognosis. Among patients with ADHF, after controlling for confounding variables, DGLA and DGLA/AA were associated with long-term mortality [DGLA: hazard ratio (HR), 0.94; 95% confidence interval (CI), 0.88-0.99; p = 0.01 and DGLA/AA: HR, 0.87; 95% CI, 0.77-0.97; p < 0.01], whereas AA was not associated with prognosis. CONCLUSION: Low omega-6 PUFA levels, particularly DGLA, and a low DGLA/AA ratio predict long-term mortality in patients with acute cardiovascular disease and ADHF. TRIAL REGISTRATION: UMIN-CTR; UMIN000007555 .

Validation Study for the Brief Measure of Quality of Life and Quality of Care: A Questionnaire for the National Random Sampling Hospital Survey.

BACKGROUND: To monitor quality of life (QOL) for patients with cancer in a large population-based survey, we developed a short QOL and quality-of-care (QOC) questionnaire. To determine the validity and reliability of this new questionnaire for evaluating QOL in patients with cancer. METHODS: Outpatients and inpatients at National Cancer Center Hospital East were administered a questionnaire, including the following items-the short QOL and QOC questionnaire (physical distress, pain, emotional distress, walk burden, and need for help with self-care; perceived general health status; and satisfaction with medical care and treatment by doctor, communication with doctor, support by health-care staff other than doctor, care for physical symptoms such as pain, and psychological care), the Functional Assessment of Cancer Therapy-General (FACT-G), the Cancer Care Evaluation Scale (CCES) for patients, and demographic and medical data. We then readministered the short QOL and QOC questionnaire. RESULTS: In total, 329 outpatients and 239 inpatients completed the survey (response rates: 80% and 90%, respectively). Total Cronbach α for the short QOL and QOC questionnaire was 0.83 for outpatients and 0.82 for inpatients. Items of the questionnaire correlated with cancer-specific measurements, FACT-G, and CCES. Intraclass correlation coefficients for all items of the questionnaire were 0.79 and 0.89 in each setting. Items of QOL and QOC did not correlate with each other. CONCLUSION: The validity and reliability of the short QOL and QOC questionnaire appear sufficient. This questionnaire enables continuous monitoring of patient QOL in large population-based surveys.

Desirable Information of Opioids for Families of Patients With Terminal Cancer.

OBJECTIVE: The aims of this study are to clarify the state of information regarding opioids for families and what kinds of experiences they had with opioids while the patient was followed as an outpatient and inpatient. PARTICIPANTS: This study was part of a cross-sectional nationwide survey of bereaved families of patients with cancer, namely, the Japan Hospice and Palliative Care Evaluation 2 study. The participants in this study comprised 572 bereaved families who had experienced the death of a family member during the period from January 2008 to December 2009 at 1 of 103 certificated palliative care units. MAIN OUTCOME MEASURES: In response to the question of "how much improvement was needed for information regarding opioids," 41% answered "improvement is not necessary at all," 43% answered "improvement is slightly necessary," 14% answered "improvement is necessary," and 2% answered "improvement is extremely necessary." Regarding anxiety about the use of opioid, it was found that 14% of respondents indicated "opioids are very safe," 65% of respondents indicated "opioids are relatively safe," 19% of respondents indicated "opioids are not so safe," and 2% of respondents indicated "opioids are not so safe at all." from the information obtained for opioids. It was found that 90% of families agreed with the item, "I would like to be clearly explained that drugs for medical purposes are safe and that the patient will not develop a drug addiction and their life expectancy will not be reduced." CONCLUSION: From this study, it is important for families of patients with cancer to be explained profound and careful information of opioid.

Development and validation of scales for attitudes, self-reported practices, difficulties and knowledge among home care nurses providing palliative care.

PURPOSE: Although educational programs for nurses are required to ensure high-quality home care, there is currently no scale to appropriately evaluate such programs for home care nurses providing palliative care. We developed and validated four scales to evaluate home care nurses' attitude, self-reported practices, difficulties, and knowledge regarding home palliative cancer care, and identified factors associated with home care nurses' attitude, self-reported practices, and difficulties. METHOD: The scale items were generated based on literature review and a cross-sectional questionnaire survey was conducted. Experienced home care nurses from visiting nurse stations who enrolled in a home palliative care educational program were recruited for this survey. RESULTS: Of the 125 questionnaires delivered to home care nurses, 122 were returned (response rate, 98%). After factor analysis, the scale for attitude comprised four domains with 12 items, the scale for self-reported practices comprised six domains with 26 items, and the scale for difficulties comprised five domains with 18 items. Cronbach's alphas for these scales were 0.61-0.70. After using the Item Response Theory model, the scale for knowledge was found to comprise 26 items. The multiple logistic regression model showed that experience in caring for terminal patients at home or in hospitals were associated with having more positive attitude, higher self-reported practices and lower difficulties. CONCLUSIONS: We developed valid and reliable scales to evaluate home care nurses' attitude, self-reported practices, difficulties, and knowledge regarding home palliative cancer care. These scales potentially useful for evaluating a home palliative cancer care education program for nurses.

Family caregivers require mental health specialists for end-of-life psychosocial problems at home: a nationwide survey in Japan.

BACKGROUND: Psychological distress is problematic for patients and their family caregivers in the oncological setting. The level of stress is influenced by the health status of the patient and their family members as well as the support system for home care. However, it remains unclear how best to support distressed caregivers providing end-of-life care at home. METHODS: The present study was performed as part of the Japan Hospice and Palliative Care Evaluation study among caregivers whose family members are provided home palliative care. The caregivers were asked whether they wished to receive psychological support from mental health specialists, and factors associated with the need for psychological support were analyzed. RESULTS: Of the 1052 caregivers, 628 completed the questionnaire. As a whole, 169 subjects [27%; 23-30% (95% confidence interval)] reported needing psychological support from a mental health specialist. According to a multiple regression analysis, factors associated with the need for psychological support included (1) emotional distress due to the need to adapt to rapid worsening of the patient's condition [adjusted odds ratio: 2.62 (95% CI 1.77-3.88), p < 0.001], (2) the poor health conditions of the caregivers [2.93 (1.61-5.36), p < 0.001], and (3) having someone else available to care for the patient in place of the caregiver [0.51 (0.34-0.78), p = 0.002]. CONCLUSIONS: Psychological support is required for caregivers tending to patients at home. Further studies are needed to construct a system to provide continuous support to caregivers. Copyright © 2015 John Wiley & Sons, Ltd.

[Talking about home hospices with terminally ill cancer patients -- a multicenter survey of bereaved families].

INTRODUCTION: Communicating with patients is clearly an integral part of physicians' practice, and introducing home hospice care is sometimes a difficult task for oncologists. The primary aims of this study were to clarify family-reported degree of emotional distress and the necessity for improvement in communication when introducing home hospice care, and to identify factors contributing to distress levels. METHODS: A multicenter questionnaire survey was conducted involving 1,052 family members of cancer patients who died at home at 15 home-based hospice services throughout Japan. RESULTS: A total of 616 responses were analyzed(effective response rate of 60%). Fifty-nine percent of the bereaved family members reported that they were distressed or very distressed in receiving information about home hospice care, and 30% reported considerable or much improvement was necessary. There were 6 determinants of family-reported degree of emotional distress and the necessity for improvement: 1 ) Family distress was experienced when the physician stated that the disease progression defeated medicine and nothing could be done for the patient. 2 ) The physicians' explanation did not match with the state of family preparation. 3 ) There was no intimacy between hospital physician and home physician. 4 ) Physicians did not make the atmosphere relaxing enough to allow families to ask questions. 5 ) Nurses did not follow up to generate additional ideas to supplement the physician's statement. 6 ) Family members experienced pressure to make a rash decision. CONCLUSION: In receiving information about transition of home care, a considerable number of families experienced high levels of emotional distress and felt a need for improvement in the communication style. This study proposes 6 strategies to alleviate family distress.

Length of home hospice care, family-perceived timing of referrals, perceived quality of care, and quality of death and dying in terminally ill cancer patients who died at home.

PURPOSE: This study aims to clarify the length of home hospice care, family-perceived timing of referrals, and their effects on the family-perceived quality of care and quality of death and dying of terminally ill cancer patients who died at home and identify the determinants of perceived late referrals. METHODS: A multicenter questionnaire survey was conducted involving 1,052 family members of cancer patients who died at home supported by 15 home-based hospice services throughout Japan. RESULTS: A total of 693 responses were analyzed (effective response rate, 66 %). Patients received home-based hospice care for a median of 35.0 days, and 8.0 % received home hospice care for less than 1 week. While 1.5 % of the families reported the timing of referrals as early, 42 % reported the timing as late or too late. The families of patients with a length of care of less than 4 weeks were more likely to regard the timing of referrals as late or too late. The patients of family members who regarded the timing of referrals as late or too late had a significantly lower perceived quality of care (effect size, 0.18; P = 0.039) and lower quality of death and dying (effect size, 0.15, P = 0.063). Independent determinants of higher likelihoods of perceived late referrals included: frequent visits to emergency departments, patient being unprepared for worsening condition, and patient having concerns about relationship with new doctor. Discharge nurse availability was independently associated with lower likelihoods of perceived late referrals. CONCLUSIONS: A significant number of bereaved families regarded the timing of referrals to home hospices as late, and the perceived timing was associated with the family-perceived quality of care and quality of death and dying. Systematic strategies to overcome the barriers related to perceived late referrals are necessary.

Association between depressive symptoms and changes in sleep condition in the grieving process.

PURPOSE: Bereaved families often suffer from insomnia and depression. However, the associations between depressive state and changes in sleep condition during the grieving process have not been investigated. This study aimed to clarify the prevalence of insomnia symptoms and to explore associations between present depressive state and changes in sleep condition in the grieving process in bereaved families of Japanese patients with cancer. METHODS: A cross-sectional, multicenter survey was conducted in 103 certified palliative care units. A questionnaire asking insomnia symptoms and depressive symptoms by the Center for Epidemiological Studies Depression Scale (CES-D) was mailed to bereaved families (N = 987). The association between present depressive state (CES-D ≥7) and sleep conditions in the grieving process were analyzed. RESULTS: A total of 561 families were enrolled for analysis. Fifty-three percent of family members were considered to be in a depressive state at the time of the investigation. Prevalence of past insomnia was 86.5% at "within a few weeks before the patient's death" (T1) and 84.5% at "within 6 months after the patient's death" (T2) in all bereaved family members. However, in contrast to decreased severity of insomnia between T1 and T2 in the non-depressive group (p < 0.05), severity of insomnia was unchanged in the depressive group during this period (p = 0.139). CONCLUSIONS: Insomnia symptoms are highly prevalent and may be associated with posthumous depressive state in bereaved Japanese families. These results suggest the need for careful observation of changes in sleep condition during the grieving process.

Why people accept opioids: role of general attitudes toward drugs, experience as a bereaved family, information from medical professionals, and personal beliefs regarding a good death.

CONTEXT: Many surveys have evaluated patient-related barriers to pain management. OBJECTIVES: To explore associations between a preference for opioids and general attitudes toward drugs, the experience and information received as a bereaved family, and beliefs regarding a good death. METHODS: A cross-sectional survey, performed in 2010, of bereaved families of patients with cancer in palliative care units across Japan. Questionnaires were sent to 997 families. RESULTS: A total of 66% of families responded. Of these, 224 responses were excluded because the family declined to participate in the study (n = 38), the patient was not receiving any opioid analgesics, and there were missing data (n = 164), or data were missing for the primary end points (n = 22). Thus, 432 responses were finally analyzed (43%). In total, 26%, 41%, and 31% of family members stated that they strongly want to receive, want to receive, or slightly want to receive opioids if needed in the future, respectively. Determinants associated with a preference for receiving opioid treatment were the following: a general appreciation of the drugs (P = 0.005), witnessing an improvement in the patient's quality of life as a result of pain relief (P = 0.003), information provided by medical professionals that the opioid could be discontinued if side effects developed (P = 0.042), and the belief that a good death was one that was free from pain and physical distress (P < 0.001). CONCLUSION: More than 90% of bereaved families whose relatives were treated with opioid analgesics reported a preference to receive opioid analgesics for the treatment of cancer pain, if necessary, in the future.

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.