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The aims of this study were (1) to develop and validate the scale to measure evidence-based nursing practice in cancer pain management and (2) to identify associated factors. We developed potential items based on the 2014 version of Japanese Clinical Guidelines for Cancer Pain Management and administered anonymous questionnaire for 189 oncology nurses in a designated cancer center. We conducted a re-test to test reliability.167 nurses participated in the study. As a result of item analysis and exploratory factor analysis, we developed a nursing practice scale of cancer pain management and its shortened version. This scale consists of 1 domain 50 items The Cronbach’s α coefficient showing internal consistency was 0.98 (shortened version 0.88). The intra-class correlation coefficient of reliability was 0.52 (shortened version 0.77). Concurrent validity was confirmed by the correlation between the total score of the whole scale and the total score of the practice of palliative care, knowledge, difficulty, self-confidence scale. We concluded that this scale was valid and reliable. Factors related to the nursing practice of cancer pain management were years of experience in cancer nursing, opportunities of postgraduate education, and satisfaction with postgraduate education. This scale can be used for evaluation of daily clinical practice and practice evaluation after educational efforts such as cancer pain nursing training.
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Purpose: This study clarified the general public’s end-of-life decision-making expectations and related factors. Method: We analyzed secondary data of 1,000 adults surveyed through the Internet. The outcome was to determine the life expectancy at the end of life, end-of-life care, and decision-makers’ wishes. Results: Regarding the prognosis, 54% wanted to know the life expectancy in end-of-life. This preference was independently associated with being notified of cancer at a young age, trust in medical professionals, and the view of life and death that disappears. Regarding end-of-life care preferences, 11% requested active treatment, and 58% requested palliative care. This preference was independently associated with older age, women, and an emphasis on being pain-free and being yourself. Regarding decision-makers’ preferences, 77% wanted to decide for themselves, and 11% wanted to decide for their families. This preference was independently associated with the young, carefree of life and death, who did not want to be notified of cancer. Conclusion: We revealed the general public’s desire for end-of-life decision-making and associated factors. In clinical practice, it can be used for screening.
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Objective: This study aimed to investigate the feasibility of a patient registry system for assessing PCT (palliative care team) by PRO (Patient-reported outcome) in Japan. Methods: We operated a patient registry system with electronic data collection at eight hospitals in 2021 in Japan. We consecutively included newly referred patients for a month and followed up with them for a month. IPOS or ESAS obtained as PRO at the start of the intervention, three days later, and every week after. The primary endpoint was the response rate to the symptom rating scale by patients and providers. Results: 318 patients were enrolled. The patient response rate was 59.1% at intervention and 37.0% after intervention, and the medical provider response rate was 98.4% at intervention and 70.3% after intervention. Interviews with PCT members indicated that participants required support to input PRO responses required support and paper questionnaire was better and that managing the survey date and overall management was burdensome. Discussion: Although only about half of the patients were able to respond to the PRO, this was the same level as in previous studies. The system and its operation method have many problems. We found that improvements such as reducing items and making the patient interviews paper-based are necessary to expand the system nationwide.
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Palliative sedation (PS) is an effective way to alleviate the refractory symptom of terminally ill cancer patients, however it can be ethical. PS is now being implemented in general wards, and there is an urgent need to understand the actual conditions of sedation care for general ward nurses and improve the quality of care. In this study, a semi-structured interview was conducted with nurses working in a respiratory medicine ward of a core cancer treatment hospital. By Krippendorff’s content analysis, 16 categories of nurses’ actions/judgments, 8 categories of positive thoughts, and 5 categories of negative thoughts were extracted. Nurses have always sought the best way to alleviate the pain of patients and their families, and have endeavored to be close to their feelings. However, there was a difference in confidence and positivity regarding multidisciplinary collaboration and sedation discussions. It was suggested that the confident efforts of nurses may support the decision-making of patients and their families and consider methods for pain relief and QOL.
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To decide the policy to promote palliative care properly, a new questionnaire has been added to Patient’s behavior survey to assess Quality of Life (QOL) of inpatients and outpatients in Japan. The aim of this study was to survey QOL score of general population in Japan by using a questionnaire of patient’s behavior survey. A large nationwide postal survey was conducted from January through February 2013 in Japan. A total of 2400 subjects were selected randomly from among members of the general population who were 20 to 79 years of age and lived in Japan. A total of 978 (41.1%) questionnaires were analyzed, and reference data of QOL score weighted by the national standard value of sex-age group population were calculated. Correlation coefficients were calculated between QOL score and SF-8TM, Patient Health Questionnaire-9 (PHQ-9), Eastern Cooperative Oncology Group Performance Status (ECOG), Memorial Symptom Assessment Scale (MSAS) score. In addition, sociodemographic factors related to QOL score were evaluated. From the perspectives of public health and administrative policy, the results of this survey will provide important basic data to evaluate patient’s behavior survey broadly and continuously with the goal of establishing a palliative care system in Japan.
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Objective: This study investigated the association between use of sedatives in terminal cancer patients near death who were receiving home care and the home care period. Methods: We conducted a retrospective review of the medical records for 1032 cancer patients who received home palliative care from 17 specialized home care clinics between June and November 2013. We checked the use of sedatives within 48 hours before death at home, and we compared the home care period between patients with and without sedation. Results: The sedatives used were diazepam (n, %: 100, 52%), flunitrazepam (29, 15%), bromazepam (27, 14%), midazolam (26, 13%), and phenobarbital (20, 10%). The median home care period (median [quartiles]) was 26 [13, 63] days and 25 [10, 64] days (Adj p=0.79) for the patients with and without sedatives, respectively. Conclusion: Among terminal cancer patients near death receiving home care, 24% were administered sedatives, with more than half of those patients receiving diazepam. There was no association between use of sedatives and the home care period.
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Objectives: To assess the perception of care and outcomes of end-of-life palliative care by bereaved family members to determine differences in care provided to patients with and without cancer. Methods: This cross-sectional, anonymous survey using a self-reporting questionnaire for bereaved family members was conducted online. Care was assessed using overall satisfaction score and the care evaluation scale (CES) and outcomes were assessed using good death inventory (GDI). Results: The present study included data from 118 patients with cancer and 299 patients without cancer (103, heart failure; 71, stroke; and 125, pneumonia). The overall satisfaction score was not significantly different between patients with and without cancer. Conversely, physical care score in the CES and autonomy score in the GDI were significantly lower in patients without cancer than in patients with cancer (p<0.05). Conclusion: The satisfaction with end-of-life care was comparable between the bereaved family members of patients without cancer and those of patients with cancer. However, results related to some items of CES and GDI suggest that some components of end-of-life care for patients without cancer might require attention. Not only treatment of the underlying disease but also relief of suffering is important to improve end-of-life care.
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Objective: The purpose of this study was to clarify the factors related to gemcitabine (GEM)-induced phlebitis. Methods: We retrospectively analyzed 400 cases of intravenous GEM administration to 50 patients from June 2014 to May 2015. We assessed the relationship between GEM-induced phlebitis and various factors including age, sex, BMI, analgesic use (NSAIDs or opioids), and GEM-administration procedures including drug formulation, dosage, and access site. Results: Phlebitis occurred in 79 cases (19.8%). Multivariate analysis indicated that sex (female), age (<65 years old), BMI (≥25 kg/m2; obesity), drug formulation (liquid), and access site (dorsal hand vein) were significantly related to the presence of phlebitis. Discussion: GEM-administration procedures should be modified in patients with these risk factors. It is desirable to apply hot fomentation and to puncture at the brachial region or cubital fossae region vein to prevent phlebitis.
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Purpose: This study was performed to compare the characteristics of home palliative care for elderly patients with cancer between age groups. Methods: The clinical records of 1,032 patients with cancer who received home medical care from June to November 2013 were reviewed retrospectively. Patients were classified as non-elderly (<65 years old), young-old (65-74 years), old-old (75-84 years), or oldest-old (≥85 years), and these groups were compared with respect to demographic characteristics, patient/family problems, outcomes, and medical care and services provided. Results: There was a higher percentage of patients with no caregiver in the oldest-old group than in the other groups (18%, p=0.014), while the young-old and oldest-old groups had a higher percentage of problems related to caregiving such as caregiver burden or absence of a caregiver (32% and 33%, p=0.002, respectively). In addition, the percentage of patients who required visiting nurses and care was higher in the old-old group (86% and 30%, respectively) and oldest-old group (89% and 35%, respectively) compared with the other two groups. Conclusion: Problems related to caregiving, such as caregiver burden or absence of a caregiver, were greater in the old-old and oldest-old groups, and a higher percentage of patients required visiting nurses and care in those two groups.
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We conducted a questionnaire survey of nurses to develop a scale for the Japanese version of the Quality of Dying and Death in the Intensive Care Unit (ICU-QODD) instrument for use by nurses. The questionnaire was based on “patient’s experience at the end of life” in ICU-QODD for health professionals in the United States. We assessed whether it could be used as a comprehensive evaluation tool. Respondents included 1,372 nurses for factor validity and internal consistency, and 39 nurses for test-retest reliability. Two factors, “physical symptoms” and “dignity” that comprised 6 items were identified. Cronbach’s alpha values were 0.89 and 0.75, respectively. Intraclass correlation coefficients were 0.62 and 0.72, respectively. Sufficient reliability and validity were confirmed. It was suggested that 6 out of 15 items could be used as for comprehensive evaluation of the ICU-QODD.
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Purpose: This study investigated the current state of medical care and palliative care provided at home and the factors influencing death at home for terminally ill cancer patients living in single-person households. Methods: We conducted a retrospective questionnaire study of 1032 cancer patients living in single-person households who received home palliative care from 17 specialized home care clinics and finished home care between June and November 2013. We compared patient background factors, outcomes, home care services, and medical care between these patients and others not living in single-person households to investigate factors influencing death at home. Results: Compared with patients not living in single-person households, the patients living in single-person households were older, had a better performance status at initiation of home palliative care, showed a lower preference for dying at home, and received more frequent social hospitalization. Among the subjects from single-person households, factors influencing death at home were a family preference for dying at home (odds ratio (OR)=14.0), poor performance status at initiation of home palliative care (OR=4.0), and no hospitalization during home palliative care (OR=16.6). Conclusion: We found that death at home for terminally ill cancer patients living in single-person households and receiving home medical care and palliative care was influenced by family preference, the performance status at initiation of home palliative care, and hospitalization during home palliative care.
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<p>Understanding the symptoms of the general population has an important role in assessing and improving the quality of palliative care systems. However, there are no reliable epidemiological data on the symptoms of the general population in Japan. The aim of this study was to survey the actual status of the symptoms experienced by the general population in Japan. A large nationwide postal survey was conducted from January through February 2013 in Japan. A total of 2400 subjects were selected randomly from among members of the general population who were 20 to 79 years of age and lived in Japan. The Memorial Symptom Assessment Scale (MSAS) was used to multi-dimensionally evaluate symptoms experienced within the past week, and the Short Form 8™ (SF-8™) was used to assess the health-related quality of life (QOL). A total of 978 (41.1%) self-completed questionnaires were analyzed. The prevalences, severity rates, and distress rates of 35 physical and psychological symptoms were analyzed according to sex and age group. In addition, the relation between symptom severity and the health-related QOL score was evaluated. From the perspectives of public health and administrative policy, the results of this survey will most likely provide important basic data, with the ultimate goal of establishing a palliative care system in Japan. </p>
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<p>Purpose: To clarify the factors that affect the family caregiver’s quality of life (QOL) of cancer patients. Methods: We conducted an internet survey including 21 items of the Japanese version CQOLC for 400 families of cancer patients in March 2012. Results: Factors that increased psychological burden were that caregivers were women, other family needed long-term care, and the patient had higher need for care. Factors that increased the family caregiver’s difficulty in their daily activities due to long-term care were caregivers are women, other family needed long-term care, caregivers did not think they had a good relationship with the patient, and the patient had higher need for care. Factors that increased financial burden were that the age of caregivers was less than 60 years, decreased of income after the patient’s diagnosis, and patients were men. Factors that increase the positive feeling for caregiving were that caregivers thought they had good relationship with the patient, and the patient’s need for care was higher. Conclusions: To reduce the burden in family caregiver of cancer patients without losing the positive feeling for caregiving would be important for both improving the family caregiver’s QOL, and to continue the care for patient in long term. </p>
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<p>Objectives: This study aimed to evaluate good death (end-of-life quality of life) from the perspective of bereaved family members. Methods: We conducted a cross-sectional, anonymous, self-report questionnaire survey for bereaved family members by web survey. Outcomes were achievement of a good death (Good Death Inventory, GDI). We compared the outcomes between with and without dementia. Results: 163 and 224 dying elderly patients with and without comorbid dementia were analyzed from bereaved family members’ responses. The achievement of good death were significantly different (GDI scores, 4.2±1.0, 4.4±0.9, Adj P=0.053) as regards “maintaining hope and pleasure,” “good relationship with family,” and “independence.” Conclusion: The achievement of good death was not significantly different between the dying elderly patients with and without comorbid dementia. Psychosocial care for informal caregivers would be important for better quality of dying in the terminally ill elderly patients with dementia.</p>
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<p>Objectives: This study aimed to evaluate the consequences of caring for end-of-life elderly patients from the bereaved family’s perspective. Methods: We conducted a cross-sectional, anonymous, self-report questionnaire survey for bereaved family members by web survey. Outcomes were caregiving consequences (Caregiving Consequences Inventory). We compared the outcomes between with and without dementia. Results: 163 and 224 dying elderly patients with and without comorbid dementia were analyzed from bereaved family members’ responses. The outcomes were not significantly different (burden, 5.24±1.12, 5.32±1.24, p=0.487; fulfillment, 4.53±1.06, 4.59±1.29, p=0.627; growth, 4.94±0.93, 5.00±1.04, p=0.523). Fulfillment was significantly associated with spouse, family visitation, and mental health. Growth was significantly associated with age, spouse, end-of-life discussion, and family preference of treatments. Conclusion: The evaluation of the consequences of caring for end-of-life elderly patients from the bereaved family’s perspective were not significantly between the informal caregivers of those with and without comorbid dementia.</p>
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<p>Aims: The aim of this study was to clarify practical use of feedback report in each institution participated the nationwide bereavement survey (J-HOPE3). Methods: After a nationwide bereavement survey (J-HOPE3) conducted in 2014, we sent a feedback report to each participated institution (20 general wards, 133 inpatient palliative care units, and 22 home hospice services). The feedback report included the results from quality of care, bereaved family’s mental status, and free comments from the participant of their own institution. We sent a questionnaire 4 month following to the feedback report for all institutions regarding the practical use of results from the feedback report. Results: The analysis included 129 (response rate 74%) returned questionnaires. The institutions that they passed around the report was 90%, discussed about their results at a staff meeting was 54%, and reported the results to manager/chief of the institution was 65%. Around 80% of the institutions responded positively to receive the feedback report of their own institution such as “It was good that they could understand the strengths and weakness of their own institutions” which reported that they worked on to improve care were 48%. Conclusions: Current study had shown data about practical use of the feedback report of bereavement study. It is important to feedback the results and encourage the institution to make use of the results in their daily practice, especially to discuss the results in staff meetings.</p>
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Objectives:To determine the factors that influence the decision maker regarding end-of-life (EOL) care and to disclose how aggressive care in the last week before death, place of death, and quality-of-life (QOL) affected the decisions made. Methods:The subjects were 409 bereaved family members (cause of death included cancer, stroke, heart disease, and pneumonia) that registered with an internet research agency. Decision-making was controlled either by the patient, family, or physician or shared by the patient, family, and physician. Results:The results of a multinomial logistic regression analysis demonstrated that when a family controlled decision-making, they were less likely to report patient-family EOL discussion [odds ratio (OR)=0.52], and that the patient had good communication with the physician (OR=0.77); they were also likely to report that the patient had dementia (OR=1.94). Families who reported physician-controlled decision-making (vs patient controlled) were less likely to report that the patient had good communication with the physician (OR=0.62). Cardiopulmonary resuscitation in the last week and place of death were not associated with the decision maker. EOL QOL was associated with EOL care of the decision maker. When a physician controlled decision-making, patient EOL QOL was at its lowest. Conclusion:To improve patient-controlled decision-making, it is critical that patients, families, and physicians have more communication regarding EOL care.
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Purpose: This survey aimed to develop a methodology for measuring the quality indicators of end-of-life care for cancer patients using the Japanese National Database, which was comprised of the health insurance claim data of all Japanese people. Methods: Life-sustaining treatment (LST) and chemotherapy near the time of death are accepted as reliable indicators of poor quality end-of-life care. To measure these, the Sampling Data Set (SDS) from the National Database (NDB) was used. Results: 1,233 cancer patients were studied, who had died from 14th to 31st October, 2012. The rates of LST and chemotherapy in the final 14 days of life were 8.2% (95%CI 6.7-10.1), 3.5% (2.6-4.8) for inpatients (n=1,079) respectively. In the SDS, 27-70% of chemotherapy drugs were not named, in order to prevent identification of patients receiving rare treatment. Discussion: The figures for rates of chemotherapy might be underestimated in the sampling data set, because of the anonymization of rare treatment. And in-patient and out-patient data may in some cases have been duplicated when entries applied to the same person. In the future using the NDB, it might be possible overcome some of these limitations.
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To monitor the quality of life （QOL）of cancer patients through the Patient Behavior Survey, a large population-based survey, we developed a short QOL and quality of care （QOC）questionnaire. In order to help evaluate QOL in cancer patients, we also conducted a web–based survey designed to evaluate the content validity and interpretability of the questionnaire. In total, 630 cancer patients completed the survey. For each item, the result that more than 90% responses determined the item was of importance indicated that the item was important for living with cancer. Regarding items related to QOC, satisfaction with care, we consolidated responses; for example, the answer of “neutral” could also be interpreted as “almost satisfied” and patients who answered “other” may also mean that the item does not apply to them. We found that this questionnaire accurately evaluated the QOL of cancer patients and the responses were interpretable and presentable.
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Purpose：To explore a methodology for evaluating end-of-life （EOL） cancer care using diagnosis procedure combination （DPC） administrative data. Methods： We investigated care provided to inpatients whose deaths were attributed to cancer and occurred between August 2010 and December 2012. We measured the quality of palliative care by dividing the decedents into two groups： those who died in the palliative care unit （PCU） and those who died in the general wards（GW）. Results： A total of 311 inpatient deaths were identified as cancer deaths. Of these, 147 patients were included in the PCU group and 164 in the GW group. We calculated the DPC data as follows： the rates of chemotherapy administered within 30 days before death （PCU 0％, GW 27％） and within 14 days before death （PCU 0％, GW 10％）, admission to the intensive care unit （PCU 0％, GW 2％）, life-sustaining interventions （PCU 0％, GW 3％）, rehabilitation sessions （PCU 10％, GW 26％）, emergency admission （PCU 2％, GW 27％）, and antibiotics （PCU 32％, GW 28％）. In the PCU group, rates of chemotherapy and emergency admission were significantly lower（＜0.0001；＜0.0001, respectively）, and rehabilitation sessions were significantly higher （p＝0.0002） than in the GW group. Conclusion： EOL care in a university hospital can be easily investigated using DPC data. Some limitations are the single-site study design, the health insurance system, and secondary use of administrative data. However, this methodology may be adapted to investigate the entire Japanese claim database and to evaluate EOL cancer care.