Development and validation of clinical implementation methods for patient-reported outcomes in Japanese multi-center palliative care units.

BACKGROUND: Patient-Reported Outcomes (PROs) are recommended for use in clinical oncology. However, they are not routinely used in professional palliative care practices in Japan. The reasons include both patient and healthcare provider factors and the implementation of PROs. This study aimed to develop and validate clinical implementation methods for PROs in Japanese palliative care units. METHODS: The Consolidated Framework for Implementation Research (CFIR) was conducted with four palliative care units in Japan. The study was conducted in six steps: unit assessment, development and implementation of a PRO implementation plan, PRO post-implementation survey and analysis of its utilization, a review of the PRO implementation process, creation of a PRO implementation method in a palliative care unit, and use and verification of the implementation method. Steps 1-5 were the development phase, and step 6 was the verification phase. RESULTS: Interviews were conducted with healthcare providers prior to PRO implementation. Intervention characteristics, patient needs in the palliative care unit, and factors related to the organization were identified as barriers. The implementation plan was developed, and the core members were selected. The implementation procedures were created in the above mentioned steps. PROs were used in the palliative care units. The same was true in the validation phase. CONCLUSIONS: This study guided PROs in specialized palliative care unit in a clinical setting. The method was developed and validated for the implementation of PROs in the palliative care unit. In the PRO implementation process, it was important to assess the unit, address the barriers to implementation, and reduce the burden on healthcare providers. Furthermore, healthcare providers had to be supported by the champion, a person responsible for the implementation of PROs in the palliative care unit.

Reliability and validity of the Japanese version of the Parenting Concerns Questionnaire.

OBJECTIVE: Cancer patients with children are increasing; however, few studies have quantitatively assessed the parenting concerns of cancer patients with children. The Parenting Concerns Questionnaire was developed in the USA in 2012 and is the only instrument to measure the parenting concerns of cancer patients with children. This study aimed to develop a Japanese version of the Parenting Concerns Questionnaire and evaluate its reliability and validity. METHODS: An Internet survey was conducted among cancer patients registered with 'Cancer Parents', an Internet community site for cancer patients, who have children aged <18 years, and 174 responses were recorded. Two weeks later, a retest was conducted, and responses were obtained from 87 patients. RESULTS: Based on confirmatory factor analysis of the factor structure proposed by the authors of the original version, factors 'I. The impact of my illness on the child's daily life (five items)', 'II. The impact of my illness on the child's feelings (five items)' and 'III. Concerns about my parenting partner (five items)' were consistent with the original version. Cronbach's alpha coefficients for all items and by factors were 0.86, 0.79, 0.86 and 0.86. The Parenting Concerns Questionnaire total scores correlated with Hospital Anxiety and Depression Scale (r = 0.52), the Functional Assessment of Cancer Therapy General (r = -0.56), Family Assessment Device-General Functioning (r = 0.51) and Multidimensional Scale of Perceived Social Support (r = -0.47). The intraclass correlation coefficients for all items and by factors were 0.81, 0.71, 0.77 and 0.85. CONCLUSIONS: The Japanese version of the Parenting Concerns Questionnaire has satisfactory reliability and validity.

Factors associated with the preparedness for bereavement in families of patients with cancer: A secondary analysis of a nationwide bereaved family survey.

OBJECTIVES: Insufficient preparedness for bereavement can affect a family's psychological health status after bereavement. However, factors associated with preparedness remain unclear. This study aimed to identify factors associated with preparedness for bereavement in families of patients with cancer. METHODS: We conducted a secondary analysis of a nationwide bereaved family survey in Japan, analyzing data from 9123 family members of patients with cancer. Logistic regression analysis was conducted to explore how sociodemographic factors, health status, and perceived care for patients and families were associated with preparedness for bereavement. RESULTS: Of the 9123 families, 1338 (15.1%) were not prepared for bereavement. Factors associated with insufficient preparedness for bereavement (all p < 0.001) were found as follows: patients' spouses (OR = 2.54), receiving care in acute hospitals (OR = 1.83), worse psychological health status during caregiving (OR = 2.13), lower social support for family members (OR = 1.90), wrong patients' awareness of medical condition from family's perspective (OR = 1.75-2.12), family preference of more aggressive treatment rather than palliative care (OR = 1.71) or not sure (OR = 2.31), not wanting to know information about the patient's prognosis (OR = 1.64-1.77), end-of-life discussion with physician 1 month before patient's death (OR = 1.45), and late or early end-of-life discussions with physician and family (OR = 1.78-1.95). CONCLUSIONS: This study's results might assist clinicians in assessing and identifying families who are not prepared for bereavement; however, preparedness for bereavement may have been associated with other factors.

Aggressive End-of-Life Treatments Among Inpatients With Cancer and Non-cancer Diseases Using a Japanese National Claims Database.

To describe aggressive treatments at end-of-life among inpatients with cancer and non-cancer diseases and to evaluate factors associated with these treatments using the Japanese national database (NDB). We conducted a retrospective cohort study among inpatients aged ≥ 20 years who died between 2012 and 2015 using a sampling dataset of NDB. The outcome was the proportion of aggressive treatments in the last 14 days of life. We considered the underlying causes of death as cancer, dementia/senility, and heart, cerebrovascular, renal, liver, respiratory, and neurodegenerative diseases. We analyzed 54,105 inpatients, with underlying cause of death distributed as follows: cancer, 24.9%; heart disease, 16.5%; respiratory disease, 12.3%; and cerebrovascular disease, 9.7%. The proportion of intensive care unit (ICU) admission was 9.7%, being the highest in heart disease (20.5%), followed by cerebrovascular diseases (12.6%), and least in dementia/senility (.6%). The proportion of cardiopulmonary resuscitation was 19.6%, being the highest in heart disease (38.1%), followed by renal diseases (19.5%), and least in cancer (6.2%). Multivariate logistic regression analysis revealed that having heart diseases, cerebrovascular diseases, younger age, less comorbidities, and shorter length of stay were associated with an increasing risk of aggressive treatments in the last 14 days of life. The proportion of aggressive treatments at the end-of-life varies depending on the disease; additionally, these treatments were associated with having heart diseases, younger age, less comorbidity, and shorter length of stay. Our findings may help develop and set benchmarks for quality indicators at the end-of-life for patients with non-cancer diseases.

Validity and reliability of the Integrated Palliative Care Outcome Scale for non-cancer patients.

AIM: This study assessed the validity and reliability of the Integrated Palliative Care Outcome Scale for non-cancer patients. METHODS: We recruited 223 non-cancer patients receiving palliative care and their healthcare providers (222) across two home care facilities and two hospitals for a cross-sectional study. We assessed the construct validity and known-group validity of the Integrated Palliative Care Outcome Scale. The weighted kappa and interclass correlation coefficients were assessed to ascertain reliability. RESULTS: The scale scores were significantly higher for the 'non-stable' group (worsening condition group) measured in the palliative care phase than for the 'stable' group (P < 0.001). Regarding validity, Spearman's correlations between similar items on the Integrated Palliative Care Outcome Scale and Edmonton Symptom Assessment System ranged from 0.61 to 0.94. Regarding reliability, the weighted kappa coefficients ranged from 0.53 to 0.81 for patients and from 0.58 to 0.90 for healthcare providers. For inter-rater reliability between patients and healthcare providers, the weighted kappa coefficients for each item ranged from 0.03 to 0.42. CONCLUSION: This study confirmed the validity and reliability of the Integrated Palliative Care Outcome Scale for non-cancer patients requiring palliative care. However, the inter-rater reliability indicates poor agreement between the assessments of patients and healthcare providers. This highlights the discrepancies between both their assessments and the importance of the patient's assessment. Geriatr Gerontol Int 2023; 23: 517-523.

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.

The Impact of Stressful Life Events after Bereavement: A Nationwide Cross-sectional Survey.

CONTEXT: Bereaved family members sometimes experience distress due to stressful life events. However, the effects of this distress on depression and grief remain unclear. OBJECTIVES: To clarify the degree of distress due to postbereavement stressful life events, its associated factors, especially social isolation, and its effects on major depressive disorder (MDD) and complicated grief (CG) risks among bereaved family members of patients with cancer. METHODS: This cross-sectional questionnaire survey was conducted in 2018 as part of the J-HOPE4 study. We recruited 1740 bereaved family members of patients with cancer who died from July to August of 2018. We assessed distress due to postbereavement stressful life events with the Bereavement Secondary Stressor Scale, social isolation with the Lubben Social Network Scale Short-Form, and the MDD and CG risk with the Patient Health Questionnaire-9 and Brief Grief Questionnaire, respectively. RESULTS: Among the 913 (52.5%) respondents, 88%, 57%, 46%, 28%, and 19% experienced distress due to incidental tasks, daily life difficulties, financial problems, problems with other people, and deterioration of family relationships, respectively. More distress was associated with higher risks of MDD (odds ratio [OR] = 2.5, P < 0.01) and CG (OR = 2.5, P < 0.01). Social isolation and specific backgrounds were associated with more distress in response to stressful life events. CONCLUSION: Most family members experienced distress due to stressful life events, which were risk factors for MDD and CG. Assessing risk factors for maladaptation to post-bereavement life changes and enhancing readiness to adapt to them is important.

Primary palliative care in Japan: needs estimation and projections - national database study with international comparisons.

OBJECTIVES: We aimed to estimate the potential population that requires palliative care, clarify the relationship between this population and the rate of ageing in Japan, and compare these trends with those of other countries. DESIGN: We used the national death registration data and population projections for Japan to estimate the population in need of palliative care using the minimal estimate method developed by Murtagh et al. Linear regression was used to create a model of mortality using sex, age at intervals of 5 years, and each major disease classification. We calculated the future population in need of palliative care until 2040 and compared the ageing data to those of other countries. SETTING/PARTICIPANTS: All adults in Japan who died from 1980 to 2040 at intervals of 5 years. RESULTS: The number of people who might need palliative care from 2020 to 2040 will also increase linearly from 1 059 000 to 1 405 000. The proportion of Alzheimer's, dementia and senility of the total need for palliative care will increase to 43.4% in 2040. The correlation coefficient between the proportion of the population in need of palliative care and the rate of ageing was 0.24 in developed countries. CONCLUSION: In Japan, the population requiring palliative care in 2040 will be 1.5 times that in 2015. Palliative care needs to be provided urgently for people with Alzheimer's disease, dementia and senility. The proportion of patients in need of palliative care may not change, although the number of patients requiring such gradually increases in developed countries.

Complexity in the context of palliative care: a systematic review.

BACKGROUND: People receiving palliative care have complex, wide-ranging, and changing needs, not just physical distress, but also psychosocial, practical, and spiritual. Influences on complexity in palliative care are different among healthcare providers and may depend on diverse aspects of the patient's condition, time, and environment. Therefore, this study aimed to integrate and describe the perspective of complexity in palliative care. METHODS: We used an integrative review, which is a method of compiling, summarizing, and analyzing existing insights from previous studies. We conducted an electronic literature search in MEDLINE (Ovid), PsycINFO (EBSCOhost), Web of Science Core Collection, and CINAHL (EBSCOhost), examining literature from May 1972 to September 2020 and updated in December 2020. Subsequently, synthesis without meta-analysis of the findings was completed. RESULTS: We identified 32 peer-reviewed articles published in English. The included literature mainly originated in Europe and the United States. The research methods included quantitative studies (n=13), qualitative studies (n=12), case studies (n=3), and reviews (n=4). We identified 29 that influenced complexity in palliative care, 25 perceptions of the patient, including background and physical, psychological, social, and spiritual; two perceptions in the healthcare setting; and two perceptions in the socio-cultural setting. Above all, the perceptions of complexity in palliative care included younger age, prognosis, and spirituality. In addition, we added the identified perceptions of complexity with references to the complexity model in palliative care. CONCLUSIONS: Although this review was limited in its search strategy and some data sources may have been overlooked, it still provided perceptions that influenced complexity in palliative care. These complex influencing perceptions are necessary for patients to receive appropriate palliative care at the right time and for health care providers to conduct a multi-disciplinary team approach. Furthermore, longitudinal prospective data are needed to examine the changes and relationships among complexity over time.

Symptoms, performance status and phase of illness in advanced cancer: multicentre cross-sectional study of palliative care unit admissions.

OBJECTIVES: To clarify the relationship between Phase of Illness at the time of admission to palliative care units and symptoms of patients with advanced cancer. METHODS: This study was a secondary analysis of the East Asian collaborative cross-cultural Study to Elucidate the Dying process. Palliative physicians recorded data, including Phase of Illness, physical function and the Integrated Palliative care Outcome Scale. We used multinomial logistic regression to analyse ORs for factors associated with Phase of Illness. Twenty-three palliative care units in Japan participated from January 2017 to September 2018. RESULTS: In total, 1894 patients were analysed-50.9% were male, mean age was 72.4 (SD±12.3) years, and Phase of Illness at the time of admission to the palliative care unit comprised 177 (8.9%) stable, 579 (29.2%) unstable, 921 (46.4%) deteriorating and 217 (10.9%) terminal phases. Symptoms were most distressing in the terminal phase for all items, followed by deteriorating, unstable and stable (p<0.001). The stable phase had lower association with shortness of breath (OR 0.73, 95% CI 0.57 to 0.94) and felt at peace (OR 0.73, 95% CI 0.56 to 0.90) than the unstable phase. In the deteriorating phase, weakness or lack of energy (OR 1.20, 95% CI 1.02 to 1.40) were higher, while drowsiness (OR 0.82, 95% CI 0.71 to 0.97) and felt at peace (OR 0.81, 95% CI 0.71 to 0.94) were significantly lower. CONCLUSION: Our study is reflective of the situation in palliative care units in Japan. Future studies should consider the differences in patients' medical conditions and routinely investigate patients' Phase of Illness and symptoms. TRIAL REGISTRARION NUMBER: UMIN000025457.

Factors related to suicidal ideation among bereaved family members of patients with cancer: Results from a nationwide bereavement survey in Japan.

BACKGROUND: Bereaved family members are known to have a higher risk of suicide, although relevant research is lacking. We aimed to clarify the percentage of bereaved family members of patients with cancer who experience suicidal ideation and the associated factors. METHODS: We conducted a secondary analysis of two cross-sectional nationwide bereavement surveys in Japan, analyzing data from a total of 17,237 bereaved family members of patients with cancer. The Patient Health Questionnaire 8 (PHQ-8) and Item 9 of the PHQ-9 were used to assess depression (PHQ-8 score ≥10) and suicidal ideation, respectively. We assessed items such as socio-demographic data, complicated grief (CG), preparedness for bereavement, and perceived social support. Logistic regression analysis was used to reveal factors related to suicidal ideation. RESULTS: Overall, 11 % of subjects reported some amount of suicidal ideation in the previous two weeks, with a suicidal ideation rate as high as 42 % among those with a higher risk of depression. Significant associations (all p < 0.0001) were found between suicidal ideation and the family member's depressive state (OR: 10.01), poor physical health status during caregiving (OR: 1.24), poor psychological health status during caregiving (OR: 1.38) pre-existing mental illness (OR: 1.38), insufficient preparedness for bereavement (OR: 0.59), and poor perceived social support (OR: 1.42). LIMITATIONS: The respondents were limited to family members of patients with cancer in Japan, and the study involved cross-sectional self-reported data. CONCLUSIONS: Clinicians should identify bereaved family members at a high risk of suicide by carefully assessing these risk factors identified in the present study.

Machine learning models to detect social distress, spiritual pain, and severe physical psychological symptoms in terminally ill patients with cancer from unstructured text data in electronic medical records.

BACKGROUND: Few studies have developed automatic systems for identifying social distress, spiritual pain, and severe physical and phycological symptoms from text data in electronic medical records. AIM: To develop models to detect social distress, spiritual pain, and severe physical and psychological symptoms in terminally ill patients with cancer from unstructured text data contained in electronic medical records. DESIGN: A retrospective study of 1,554,736 narrative clinical records was analyzed 1 month before patients died. Supervised machine learning models were trained to detect comprehensive symptoms, and the performance of the models was tested using the area under the receiver operating characteristic curve (AUROC) and precision recall curve (AUPRC). SETTING/PARTICIPANTS: A total of 808 patients was included in the study using records obtained from a university hospital in Japan between January 1, 2018 and December 31, 2019. As training data, we used medical records labeled for detecting social distress (n = 10,000) and spiritual pain (n = 10,000), and records that could be combined with the Support Team Assessment Schedule (based on date) for detecting severe physical/psychological symptoms (n = 5409). RESULTS: Machine learning models for detecting social distress had AUROC and AUPRC values of 0.98 and 0.61, respectively; values for spiritual pain, were 0.90 and 0.58, respectively. The machine learning models accurately identified severe symptoms (pain, dyspnea, nausea, insomnia, and anxiety) with a high level of discrimination (AUROC > 0.8). CONCLUSION: The machine learning models could detect social distress, spiritual pain, and severe symptoms in terminally ill patients with cancer from text data contained in electronic medical records.

Experience of the temporary discharge from the inpatient palliative care unit: A nationwide post-bereavement survey for end-of-life cancer patients.

Objective: Inpatient palliative care units (PCUs) have two roles: place of death and symptom control. In case of symptom control, most patients whose distressing symptoms could be relieved would be temporarily discharged back home. However, the experience of the patient and their family during temporary discharge is unclear. Methods: This study is a part of the Japan HOspice and Palliative Care Evaluation Study 3, a nationwide cross-sectional post-bereavement survey. We sent questionnaires to bereaved relatives of cancer patients who died in PCUs in 2018. Results: Among 968 questionnaires sent, 571 questionnaires were analyzed (59%). Sixteen percent of patients experienced temporary discharge from PCUs. Seventy-two percent of bereaved family members reported that patients said "I am happy to be discharged home." Overall, 22%-37% of participants reported improvement in the patient's condition after discharge. The caregiver's recognition of better patient's quality of life at home and the doctor's assurance of re-hospitalization, if necessary, were significantly associated with positive experience. Conclusions: Bereaved family members recognized temporal discharge as positive experiences for patients and families. Appropriate home palliative care and discharge planning would contribute to positive experience after discharge.

Bathing in Terminal Care of Cancer Patients and Its Relation to Perceptions of a "Good Death": A Nationwide Bereavement Survey in Japan.

Background: Bathing in a tub is integral to Japanese culture. It improves palliative care patients' symptoms and may improve quality of life. Objectives: This study aimed to determine the prevalence and impressions of bathing for terminally ill cancer patients and its relations to the evaluations of perceived end-of-life care and achievement of a good death. Design: This was a cross-sectional, anonymous, self-report questionnaire survey. Setting/Subjects: The questionnaire for this study was sent to bereaved family members who had lost loved ones in 14 general hospitals and 187 palliative care wards in Japan. Measurements: The bereaved family members of the patients who had actually bathed were asked about their impression of bathing. The short version of the Good Death Inventory (GDI) and the Care Evaluation Scale were used to evaluate "achievement of a good death." In total, 1819 surveys were sent between July and September 2018 to bereaved family members of patients who had died between February 2014 and January 2018 in 14 general hospitals and 187 palliative care wards in Japan. Overall 885 questionnaires (valid response rate 48%) returned by bereaved family members were analyzed. Results: Overall, 85% of bereaved family members of patients who bathed evaluated the experience positively, 86% reported that the patient's face seemed to become calm after the bath, and 28% of bereaved family members whose loved one had not bathed reported regretting it. The total GDI score for the bereaved family's desired death was 82.7 ± 13.0 for the bathing group and 75.4 ± 15.7 for the no bathing group, a significant difference (effect size = 0.52, p < 0.01). Conclusions: Bathing before death was evaluated positively and was associated with the achievement of a good death.

Comparison of the quality of death between primary malignant brain tumor patients and other cancer patients: results from a nationwide bereavement survey in Japan.

PURPOSE: No studies have investigated the association between malignant brain tumor and the quality of dying, which is an important outcome in end-of-life care. This study aimed to clarify whether the quality of dying and related factors in patients with malignant brain tumor differ from those in patients with other malignant diseases. METHODS: This was a secondary analysis of data collected by two nationwide, multicenter, bereavement surveys of palliative care units in Japan. This analysis included 14,171 bereaved family members (160 patients with malignant brain tumors). The quality of dying was examined using the good death inventory (GDI), a validated tool widely used in palliative care settings. RESULTS: Patients with malignant brain tumors were younger (p < 0.0001) and had a longer palliative care unit stay during their end-of-life (p < 0.0001) than others. The total GDI score was significantly lower in patients with malignant brain tumors than others (p < 0.0001). Five GDI items were significantly lower in the malignant brain tumor group than other cancer group: "Being able to stay in one's favorite place" (p = 0.03); "Trusting the physician" (p = 0.003); "Not being a burden to others" (p = 0.01); "Being independent in daily activities" (p = 0.01); and "Feeling that one's life is worth living" (p = 0.001). CONCLUSION: This study showed that the quality of dying of patients with malignant brain tumors was lower compared to other cancers, suggesting the need to review care for patients with malignant brain tumors based on their characteristics.

Association between experiences of advanced cancer patients at the end of life and depression in their bereaved caregivers.

OBJECTIVE: Research on the association between circumstances of death in advanced cancer patients and depression in their bereaved caregivers is limited. METHODS: A longitudinal study was performed on patients admitted to 21 inpatient hospices/palliative care units (PCUs) in Japan. Patient symptoms were assessed at admission and in the last 3 days of life. Data on distressing events (unexpected death, bleeding) and received treatments (morphine prescriptions, continuous deep sedation, cardiopulmonary resuscitation) were also obtained. Bereaved caregiver depression was assessed 6 months or more after patient death via mail survey using the Patient Health Questionnaire-9 (PHQ-9). A multivariable logistic regression analysis was used to explore variables predicting bereaved caregiver depression. RESULTS: Of 1324 deceased patient-bereaved caregiver dyads, data were finally analyzed for 711 dyads. The proportion of probable depression (PHQ-9 scores ≥10) in bereaved caregivers was 13.6% (91/671; 95% confidence interval: 11.0-16.2). The multivariable logistic regression analysis showed that patient hyperactive delirium at PCU admission was significantly associated with the development of bereaved caregiver depression (odds ratio: 2.2, 95% CI: 1.2-3.8). Bereaved caregiver perceived low social support (OR: 4.7, 95% CI: 2.2-10.0) and low preparedness for death (OR: 4.5, 95% CI: 2.6-7.8) were also significantly associated with the development of depression. Other patient and bereaved caregiver variables had no association with depression. CONCLUSIONS: Hyperactive delirium in terminally ill cancer patients was associated with bereaved caregiver depression. The development of effective strategies to reduce delirium-related agitation and to provide educational interventions for caregivers may be needed.

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.

Association between temporary discharge from the inpatient palliative care unit and achievement of good death in end-of-life cancer patients: A nationwide survey of bereaved family members.

AIM: To explore the unclear association between temporary discharge home from the palliative care unit and achievement of good death, in the background of increases in discharge from the palliative care unit. Association between experiences and circumstances of patient and family and duration of temporary discharge was also examined. METHODS: This study was a secondary analysis of data from a nationwide post-bereavement survey. RESULTS: Among 571 patients, 16% experienced temporary discharge home from the palliative care unit. The total good death inventory score (p < .05) and sum of 10 core attributes (p < .05) were significantly higher in the temporarily discharged and stayed home ≥2 weeks group. Among all attributes, "Independent in daily activities" (p < .001) was significantly better in the temporarily discharged and stayed home ≥2 weeks group. Regarding the experience and circumstance of patient and family, improvement of patient's appetite (p < .05), and sleep (p < .05) and peacefulness (p < .05) of family caregivers, compared to the patient being hospitalized, were associated with longer stay at home after discharge. CONCLUSIONS: Patient's achievement of good death was better in the temporarily discharged and stayed home longer group, but this seemed to be affected by high levels of independence of the patient. Temporary discharge from the palliative care unit and staying home longer was associated with improvement of appetite of patients and better sleep and mental health status of family caregivers. Discharging home from palliative care unit is worth being considered even if it is temporary.

Effects of Bathing in a Tub on Physical and Psychological Symptoms of End-of-Life Cancer Patients: An Observational, Controlled Study.

This observational, controlled study explored the effects of bathing on the physical and psychological aspects of terminal cancer patients on a palliative care ward. With nurses' assistance, the patients evaluated and recorded the severity of their symptoms at 10:00 am, 30 minutes after initial bathing, and at 5:00 pm. The bathing care was provided as routine care according to the patients' wishes. Twelve symptoms were measured using 9 items (numbers 1-9) from the Edmonton Symptom Assessment System-Revised Japanese version and 3 items from the Cancer Fatigue Scale. Outcomes were compared between bathing days and nonbathing days (control) and between before and after bathing. Of the 57 bathers, data were available for both bathing days and nonbathing days for 42 bathers. In the comparison between bathing and nonbathing days, tiredness was significantly improved (effect size [ES], 0.35; P = .02). On the basis of the pre-post bathing comparison, 6 symptoms, namely, tiredness (ES, 0.40; P < .01), lack of appetite (ES, 0.36; P = .01), decreased well-being (ES, 0.33; P = .01), anxiety (ES, 0.36; P = .01), pain (ES, 0.31; P = .02), and depression (ES, 0.30; P = .02), were significantly improved. Bathing in a tub effectively improves tiredness and might be effective for distressing symptoms in end-of-life cancer patients.

Changes in depressive symptoms among family caregivers of patients with cancer after bereavement and their association with resilience: A prospective cohort study.

OBJECTIVES: To elucidate changes in depressive symptoms after bereavement and the impact of pre-loss resilience on such changes and on the extent of complicated grief and posttraumatic growth. METHODS: Prospective cohort surveys were provided to family caregivers of patients with cancer in four palliative care units (PCUs) before and after bereavement. Pre-loss Connor-Davidson Resilience Scale scores, pre- and post-loss Patient Health Questionnaire-9 scores, post-loss Brief Grief Questionnaire scores, and the expanded Posttraumatic Growth Inventory scores were determined. RESULTS: Out of 186 bereaved family caregivers, 71 (38.2%) responses were analyzed, among which 47% pre-loss and 15% post-loss responses suggested to be a high risk for major depressive disorder (MDD). Approximately 90% of family caregivers at a high risk for post-loss MDD were already at a high risk for pre-loss MDD. Even after adjustment of the background variables as covariates, the interaction effect between family caregivers' pre-loss depressive symptoms and resilience on post-loss depressive symptoms was observed (F = 7.29; p < 0.01). Moreover, pre-loss resilience was not associated with other bereavement outcome measures. CONCLUSIONS: Among family caregivers of patients with cancer in PCUs, 47% and 15% had high risk for MDD before and after bereavement, respectively. Moreover, pre-loss resilience mitigated post-loss depressive symptoms among family caregivers who had high risk for MDD before bereavement. However, considering the study's small sample size, further research is needed.