Reference Data, Characteristics and Related Factors of Quality of Life Assessed by a Questionnaire of Patient’s Behavior Survey in the General Population in Japan

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.

Symptom Prevalence, Severity, and Distress Assessed by Memorial Symptom Assessment Scale (MSAS) in the General Population in Japan

<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>

A Second Time Nationwide Survey of Quality of End-of-Life Cancer Care in General Hospitals, Inpatient Palliative Care Units, and Clinics in Japan: The J-HOPE 2 Study

<p>Periodic evaluation of end-of- life (EOL) palliative care is important to maintain and improve quality of EOL palliative care. We conducted a cross-sectional, anonymous, self-report questionnaire survey for bereaved family members of cancer patients in 2010. This was the second time nationwide survey. This study aimed to evaluate EOL cancer care from the perspective of bereaved family members in nationwide general hospitals, inpatient palliative care units (PCUs), and home hospices in Japan and to explore whether there is any change of quality of palliative care over the last nationwide survey conducted in 2007. Among member facilities of Hospice Palliative Care Japan, 25 general hospitals, 103 PCUs, 14 clinics participated in this study and 7797 bereaved family members answered the questionnaire. Overall, bereaved family members were satisfied with EOL care in all places of death, as in the last survey. Although results indicated that coordination of care and physical care of nurse were warranted to improve in general hospitals, drawback of PCUs were availability and the potential deficits of clinics were the environment. Through the years, there is no clinically significant change from the last survey. We should continue to make efforts to evaluate and monitor palliative care in Japan for quality control.</p>

Preliminary study for the brief measure of quality of life and quality of care for the national random sampling hospital survey: content validity and interpretability

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.

Family experience and evaluation about caring the body of deceased patient in Japanese inpatient hospices: a content analysis of free comments in questionnaire survey

Objectives: Primary aim of this study was to clarify the experience and evaluation of families who about caring the body of the deceased patient by nurses at Japanese inpatient hospices and palliative care unit. Method: A mail survey was performed on 958 bereaved family members of 103 palliative care units. A total of 598 family members replied. This study was content analysis about free comments in the questionnaire. Result: A total of 301 comments from 162 questionnaires were identified as the subjects for content analysis. The family was experience satisfaction or dissatisfaction about the way caring the body of the deceased patient. The family felt hesitation and worries about caring the body of deceased patient. A content analysis revealed 3 underlying themes: the family evaluate as a good experience, the family evaluate as an unpleasant experience, the family evaluate as an experience of hesitation and worries. Conclusion: The family was satisfied about treating the patient in the same way before died, making patient face beautiful and calm, facilitates family’s preparation. When nurses recommend families to care the body of deceased patient, which become memorably experience, and they come to be get over sorrow after the bereavement. But they need to confirm the family’s preparation and choose what they can do.

Family evaluation about caring the body of deceased patient by nurses in Japanese inpatient hospices

<b>Objectives:</b> Primary aim of this study was to clarify the family evaluation about caring the body of the deceased patient by nurses at Japanese inpatient hospices and palliative care unit. <b>Method:</b> A mail survey was performed on 958 bereaved family members of 103 palliative care units in July, 2010.<b> Result:</b> A total of 597 family members replied（62％）. As a whole, 441（74％）families reported that they were satisfied with the way caring the body of the deceased patient by nurses. A multivariate analysis revealed three factors were significantly associated with the levels of satisfaction:the patient face became peaceful and calm, and nurses treated the patient in the same way before died, and patient age was over 70 years old. <b>Conclusion:</b> Making patient face peaceful and calm, and treating the patient in the same way before died is important in caring the body of the deceased.

Studies on the role of palliative care and home health care for cancer patients at the time of disaster based on the interview survey of healthcare in the affected coastal region of the East Japan Earthquake

East Japan earthquake after cancer is not little survey about patients with palliative care and home health care. In this study, the cancer during an earthquake which aims to make recommendations for future large－scale disasters, and investigation of actual conditions of palliative care and home health care system or manual for basic data. Healthcare in the stricken coastal region 53 conducted semi－structured interviews. Results than cancer healthcare for patients with palliative care and home health care experience is 【cancer providing healthcare to patients with disabilities】【patient lost during the tsunami damage and evacuation oral medication continued failure】【failure of the medical provision of in－home patients by disruption of lifeline】【regional health providers and backward medical assistance and emergency medical group with disabilities】【mental care to medical staff】【disorder of the nuclear power plant accident community health providers】 of 6 organized by category. Be prepared for major disasters, disasters when cancer patients with palliative care and home care issues and how to respond it became evident.

Effects of organization-related variables on evaluation of palliative care by informal caregivers

<b>Purpose: </b>The aim of this study was to clarify the factors contributing to the evaluation of perceived care in inpatient palliative care services from the aspect of informal caregiver after their loss of the patient to cancer. <b>Method: </b>A questionnaire was mailed to 9,684 bereaved subjects who had lost family members at one of 103 palliative care units in Japan to evaluate their sociodemographic characteristics and the evaluation of perceived care. An institution survey was performed to collect organization-related variables. The evaluation of perceived care was rated by the Care Evalutaion Scale (CES), the Good Death Inventory (GDI) and single item of overall satisfation. <b>Result: </b>A total of 5,810 responses were analyzed (response rate＝60％). Uni-variate and multivariate analysis was performed to clarify the determinants of each scale. Significant determinants of the score in the evaluation of care identified were: the rate of private room (100％), independent facility, palliative care physician being night-time duty, the number of nurses at night (＞0.1 per bed), sending a letter to every bereaved family, holding a memorial services for every bereaved family and having a religious background. <b>Conclusion: </b>In conclusion, the evaluation of palliative care from the aspect of informal caregiver was influenced by various organization-related variables.

Factors affecting death at home

This ecological study revealed the relationship between the percentage of death at home and medical and socioeconomic characteristics. This study was a secondary analysis of national data from the Population Survey Report in 2010 and government statistics in Japan. This data was analyzed by exploratory factor analysis and multiple linear regression analysis. As a result of exploratory factor analysis, medical and social characteristics are classified in three domains, “depopulation and aging”, “hospital and medical facility resources” and “access for home medical care”. By multiple linear regression analysis using results of exploratory factor analysis, cancer death was associated with “access for home medical care” and death from all causes was associated with “hospital and medical facility resources” and “access for home medical care”. In conclusion, death at home in cancer patients was strongly affected by “access for home medical care”. Death at home from all causes was due to poor hospital and medical facility resources and good access to home medical.

Reliability and validity of Japanese version Caregiver Quality of Life Index-Cancer (CQOLC)

<b>Purpose</b>: This study was to examine both the reliability and validity of the Japanese version of the Caregiver Quality of Life Index-Cancer (CQOLC), which was developed to measure the quality of life of family caregivers of cancer patients. <b>Methods & Results</b>: Study subjects comprised 400 family caregivers who were registered at an Internet research company. The explanatory factor analysis yielded the following 4 domains: psychological burden (8 items); positive emotions (5 items); and financial burden (3 items); disruption of daily living (5 items). The Cronbach's alpha coefficients of the total score and each domain were 0.85 and 0.75 to 0.88, respectively. The total score and each domain were moderately correlated with mental health, vitality, social functioning, general health, role emotinal scores from the SF-36. The intraclass correlation coefficients of the total score and each domain were 0.78 and 0.67 to 0.74, respectively. <b>Conclusion</b>: These results suggest that the Japanese version of the CQOLC has sufficient reliability and validity.