Self-perceived Burden for People With Life-threatening Illness: A Qualitative Systematic Review.

CONTEXT: The perception of being a burden to others is a significant concern for people with life-threatening illness. It is unclear what underpins the concept of "self-perceived burden". OBJECTIVES: To appraise and integrate primary evidence underpinning the concept of self-perceived burden (SPB) with respect to their informal caregivers among adult patients with life-threatening illness. METHODS: This is a systematic review and a thematic synthesis of qualitative primary data. MEDLINE, Embase, PsycINFO, CINAHL, and Web of Science were searched in September 2021, supplemented by hand searching of textbooks and web search engines, peer-review journals, and contact with experts. Qualitative studies were included if they provided primary data of adult patients' (with life-limiting illness) SPB toward their informal caregivers. Studies were appraised using the Critical Appraisal Skills Programme checklist. RESULTS: Nine studies were included, reporting on 219 patients who mostly had advanced life-threatening illness and needed physical assistance for daily activities. SPB is a highly subjective perception contrasting self and/or informal caregivers in the past, present, and future. Patients develop SPB feeling uncertain about caregivers' perceptions and increasing future burden. SPB interacts with other factors of surrounding complex balances (such as care needs, reality, and identity) which would change over time, and patients' reactions to SPB at the sacrifice of their wishes may conversely increase the total suffering. CONCLUSION: SPB is not a static perception but a fluctuating and complex 'process' based on uncertainty. More diverse understandings and following interventions to achieve a better balance of care should be sought.

The experience of providing end-of-life care at home: The emotional experiences of young family physicians.

Background: End-of-life care is now a major issue in Japan as a result of the rapidly aging population; hence, the need for fostering family physicians to be engaged in end-of-life care at home is increasing. Studies in the United States and the United Kingdom have shown that physicians feel emotional and moral distress in end-of-life care, and that they develop detachment and dehumanizing attitudes toward patients as a coping mechanism. However, few studies have explored the emotional experiences that family physicians have during home-based end-of-life care. The aim of this study is to explore the emotional experiences of young family physicians in such situations. Methods: We conducted a qualitative analysis of interviews with family medicine residents or family physicians who had just completed their residency. The interviews were audio-recorded and transcripts were prepared. The coded data were analyzed according to thematic analysis using NVivo 10 software. Results: Study participants were 12 family physicians of PGY 5-11, with experienced end-of-life care cases of 3-20. Thirteen themes were extracted from the data, which were categorized into five domains: difficulties in end-of-life discussion, emotions of physicians, the role of physicians, communicating with the family, and positivity in end-of-life care. The physicians experienced various emotions and struggles within these domains, but they also felt something positive through providing care for the dying patients and their families. Conclusion: Family physicians experience various emotional difficulties during end-of-life home care. However, positive emotions at the end of life were also experienced through their care.

Impact of COVID-19 infection rates on admissions for ambulatory care sensitive conditions: nationwide difference-in-difference design in Japan.

OBJECTIVES: SARS-CoV-2 infection (COVID-19) has affected tertiary medical institutions and primary care. Admission for ambulatory care sensitive conditions (ACSCs) is an important indicator of primary care quality. However, no nationwide study, especially in Asia, has examined the association between admissions for ACSCs and local surges in COVID-19. This study aimed to examine how the number of admissions for ACSCs has changed in Japan between the areas with higher and lower rates of COVID-19 infection. DESIGN: This was a retrospective two-stage cross-sectional study. We employed a difference-in-difference design to compare the number of hospital admissions for ACSCs between the areas with higher and lower rates of COVID-19 infection in Japan. SETTING: The study used a nationwide database in Japan. PARTICIPANTS: All patients were aged 20 years and above and were admitted due to ACSCs during the study period between March and September 2019 (before the pandemic) and between March and September 2020 (during the pandemic). RESULTS: The total number of ACSC admissions was 464 560 (276 530 in 2019 and 188 030 in 2020). The change in the number of admissions for ACSCs per 100 000 was not statistically significant between the areas with higher and lower rates of COVID-19 infection: 7.50 (95% CI -87.02 to 102.01). In addition, in acute, chronic and preventable ACSCs, the number of admissions per 100 000 individuals did not change significantly. CONCLUSION: Although admissions for ACSCs decreased during the COVID-19 pandemic, there was no significant change between the areas with higher and lower rates of COVID-19 infection. This implies that the COVID-19 pandemic affected the areas with higher infection rates and the areas with lower rates.

Translation and Cross-Cultural Adaptation of the Supportive and Palliative Care Indicators Tool into Japanese: A Preliminary Report.

Background: There is a need for tools in primary care to support clinicians to identify patients with unmet palliative care needs. The Supportive and Palliative Care Indicators Tool (SPICT) is concise and covers most conditions in primary care settings. However, the SPICT was not available in Japanese. Methods: The translation and cultural adaptation of the SPICT was conducted in four stages: forward translation (Stage I), synthesis (Stage II), back translation (Stage III), and expert committee review (Stage IV). Results: During the translation process, any content challenging to translate was addressed in Stage II and through discussion among the researchers. The expert committee review provided valuable insights on palliative care in Japan in addition to the translation. Conclusion: The Japanese version of the SPICT and its user guide are ready to be tested in clinical settings. They have the potential to help Japanese family physicians integrate palliative care in their care of patients with all life-limiting illnesses.

Perspectives on expert generalist practice among Japanese family doctor educators: a qualitative study.

BACKGROUND: Expert generalist practice (EGP) is increasingly being viewed as the defining expertise of generalist care. In Japan, several prominent family doctors consider it important and relevant in the Japanese context. However, no study has examined Japanese family doctor educators' perceptions of EGP. AIM: To explore Japanese family doctor educators' perceptions of EGP. DESIGN & SETTING: A qualitative study among family doctor educators in Japan. METHOD: Focus group interviews were conducted using a semi-structured interview guide following a short lecture on EGP. A qualitative description method was adopted and the framework method was used to conduct thematic analysis. RESULTS: Participants were 18 family medicine doctor educators, including 11 directors and six associate directors of family medicine training programmes. The results suggested that the concept of EGP was important and applicable to primary care in Japan. Participants' perceptions on EGP pertained to the following four areas: impact of EGP, triggers for EGP, enablers for EGP, and educational strategies for EGP. CONCLUSION: The concept of EGP may be useful in clinical practice in Japan, especially in complex patient care. A clearer framework for or description of EGP, and of non-traditional methods, such as ascetic practice and awareness of the self, were proposed as possible educational strategies.

Comparison between patient-reported and clinician-reported outcomes: Validation of the Japanese version of the Integrated Palliative care Outcome Scale for staff.

OBJECTIVES: The goal of palliative and supportive care is to improve patients' quality of life (QoL). Patient-reported outcome measures (PROMs) are the gold standard for the assessment of QoL and symptoms; however, when self-reporting is complicated, PROMs are often substituted with proxy-reported outcome measures, such as clinician-reported outcome measures. The objective of this study was to assess the validity and reliability of the Japanese version of the Integrated Palliative care Outcome Scale (IPOS) for staff (IPOS-Staff). METHODS: This multicenter, cross-sectional observational study was conducted concurrently with the validation of the IPOS for patients (IPOS-Patient). Japanese adult patients with cancer and their staff were recruited. We assessed the characteristics of the patients and staff members, missing values, prevalence, and total IPOS scores. For the analysis of criterion validity, intra-rater, and inter-rater reliability, we calculated intraclass correlations (ICCs). RESULTS: One hundred and forty-three patients completed the IPOS-Patient, and 79 medical staff members completed the IPOS-Staff. The most common missing values from IPOS-Staff were Family Anxiety (3.5%) and Sharing Feelings (3.5%). Over half of the patients scored themselves moderate or worse for Poor Mobility, Anxiety, and Family Anxiety, while staff members scored patients moderate or worse for Weakness, Anxiety, and Family Anxiety. For criterion validity (patient-staff agreement) as well as intra-rater and inter-rater reliability, ICCs ranged from 0.114 (Sharing Feelings) to 0.826 (Nausea), 0.720 (Anxiety) to 0.933 (Nausea), and -0.038 (Practical Problems) to 0.830 (Nausea), respectively. SIGNIFICANCE OF RESULTS: The IPOS-Staff is easy to respond to; it has fair validity and reliability for physical items but poor for psycho-social items. By defining the context and objectives of its use and interpretation, the IPOS-Staff can be a useful tool for measuring outcomes in adult patients with cancer who cannot complete self-evaluations.

Frequency of discussing and documenting advance care planning in primary care: secondary analysis of a multicenter cross-sectional observational study.

BACKGROUND: To improve the quality of advance care planning (ACP) in primary care, it is important to understand the frequency of and topics involved in the ACP discussion between patients and their family physicians (FPs). METHODS: A secondary analysis of a previous multicenter cross-sectional observational study was performed. The primary outcome of this analysis was the frequency of and topics involved in the ACP discussion between outpatients and FPs. In March 2017, 22 family physicians at 17 clinics scheduled a day to assess outpatients and enrolled patients older than 65 years who were recognized by FPs as having regular visits. We defined three ACP discussion topics: 1) future decline in activities of daily living (ADL), 2) future inability to eat, and 3) surrogate decision makers. FPs assessed whether they had ever discussed any ACP topics with each patient and their family members, and if they had documented the results of these discussions in medical records before patients were enrolled in the present study. We defined patients as being at risk of deteriorating and dying if they had at least 2 positive general indicators or at least 1 positive disease-specific indicator in the Japanese version of the Supportive and Palliative Care Indicators Tool. RESULTS: In total, 382 patients with a mean age of 77.4 ± 7.9 years were enrolled, and 63.1% were female. Seventy-nine patients (20.7%) had discussed at least one ACP topic with their FPs. However, only 23 patients (6.0%) had discussed an ACP topic with family members and their FPs, with the results being documented in their medical records. The topic of future ADL decline was discussed and documented more often than the other two topics. Patients at risk of deteriorating and dying discussed ACP topics significantly more often than those not at risk of deteriorating and dying (39.4% vs. 16.8%, p < 0.001). CONCLUSION: FPs may discuss ACP with some of their patients, but may not often document the results of this discussion in medical records. FPs need to be encouraged to discuss ACP with patients and family members and describe the decisions reached in medical records.

Validation of the Integrated Palliative care Outcome Scale (IPOS) - Japanese Version.

BACKGROUND: To improve palliative care practice, the need for patients-reported outcome measures is increasing globally. The Integrated Palliative care Outcome Scale (IPOS) is a streamlined outcome scale developed to comprehensively evaluate patients' distress. The goal of this study is to assess the reliability and validity of IPOS-Japanese version in cancer patients. METHODS: This is a multicenter, cross-sectional observational study. We assessed the missing values, prevalence, test-retest reliability, criterion validity and known-group validity in Japanese adult cancer patients. Patients provided responses to IPOS, European Organization for Research and Treatment for Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30), and Functional Assessment of Chronic Illness Therapy- Spiritual 12 (FACIT-Sp12). Our medical staff provided responses to Support Team Assessment Schedule (STAS). RESULTS: One hundred forty-two patients were enrolled at six palliative care facilities. Missing values accounted for less than 1% of most items, with a maximum of 2.8%. The prevalence of symptoms was 17.7-88.7%. The intra-class correlation coefficient ranged from 0.522 to 0.951. The range of correlation coefficients with EORTC-QLQ-C30, FACIT-Sp12 and STAS as gold standards was 0.013 to 0.864 (absolute values). Total IPOS scores were positively correlated with Eastern Corporative Oncology Group Performance Status (P < 0.001). CONCLUSION: IPOS-Japanese version is a valid and reliable tool. The scale is useful in assessing physical, psychological, social and spiritual symptoms and in measuring outcomes of adult cancer patients in Japan.

Prevalence and Characteristics of Patients Being at Risk of Deteriorating and Dying in Primary Care.

CONTEXT: Understanding the prevalence and characteristics of primary care outpatients being at risk of deteriorating and dying may allow general practitioners (GPs) to identify them and initiate end-of-life discussions. OBJECTIVES: This study aimed to investigate the prevalence and characteristics of primary care outpatients being at risk of deteriorating and dying, as determined by the Supportive and Palliative Care Indicators Tool (SPICT™). METHODS: A multicenter cross-sectional observational study was conducted at 17 clinics with 22 GPs. We enrolled all patients aged ≥65 years who visited the GPs in March 2017. We used the Japanese version of the SPICT to identify patients being at risk of deteriorating and dying. We assessed the demographic and clinical characteristics of enrolled patients. RESULTS: In total, 382 patients with a mean age of 77.4 ± 7.9 years were investigated. Sixty-six patients (17.3%) had ≥2 positive general indicators or ≥1 positive disease-specific indicator in the SPICT-JP. Patients with dementia/frailty, neurological disease, cancer, and kidney disease showed a significantly elevated risk of deteriorating and dying, whereas patients with other specific disease did not. The patients at risk were significantly older and less likely to be living with family at home. They also had a higher Charlson Comorbidity Index score and a lower Palliative Performance Scale score. CONCLUSION: Among primary care outpatients aged over 65 years, 17.3% were at risk of deteriorating and dying regardless of their estimated survival time, and many outpatients at risk were not receiving optimal multidisciplinary care.

Identified Palliative Care Approach Needs with SPICT in Family Practice: A Preliminary Observational Study.

BACKGROUND: Identifying patients who require palliative care approach is challenging for family physicians, even though several identification tools have been developed for this purpose. OBJECTIVE: To explore the prevalence and characteristics of family practice patients who need palliative care approach as determined using Supportive and Palliative Care Indicators Tool (SPICT™, April 2015) in Japan. DESIGN: Single-center cross-sectional study. SETTING/SUBJECTS: We enrolled all patients ≥65 years of age who visited the chief researcher's outpatient clinic in October 2016. MEASUREMENTS: We used Japanese version of SPICT (SPICT-J) to identify patients who need palliative care approach. We assessed patients' backgrounds and whether they had undergone advance care planning with their family physicians. RESULTS: This study included 87 patients (61 females) with a mean age of 79.0 ± 7.4 years. Eight patients (9.2%) were identified as needing palliative care approach. The mean age of patients who needed this approach was 82.3 ± 8.3 years and main underlying conditions were heart/vascular disease (37.5%), dementia/frailty (25.0%), and respiratory disease (12.5%). Only two of eight patients identified as needing palliative care approach had discussed advance care planning with their family physicians. CONCLUSIONS: In family practice, 9.2% of outpatients ≥65 years of age were identified as needing palliative care approach. Family physicians should carefully evaluate whether outpatients need palliative care approach.

International variations in primary care physician consultation time: a systematic review of 67 countries.

OBJECTIVE: To describe the average primary care physician consultation length in economically developed and low-income/middle-income countries, and to examine the relationship between consultation length and organisational-level economic, and health outcomes. DESIGN AND OUTCOME MEASURES: This is a systematic review of published and grey literature in English, Chinese, Japanese, Spanish, Portuguese and Russian languages from 1946 to 2016, for articles reporting on primary care physician consultation lengths. Data were extracted and analysed for quality, and linear regression models were constructed to examine the relationship between consultation length and health service outcomes. RESULTS: One hundred and seventy nine studies were identified from 111 publications covering 28 570 712 consultations in 67 countries. Average consultation length differed across the world, ranging from 48 s in Bangladesh to 22.5 min in Sweden. We found that 18 countries representing about 50% of the global population spend 5 min or less with their primary care physicians. We also found significant associations between consultation length and healthcare spending per capita, admissions to hospital with ambulatory sensitive conditions such as diabetes, primary care physician density, physician efficiency and physician satisfaction. CONCLUSION: There are international variations in consultation length, and it is concerning that a large proportion of the global population have only a few minutes with their primary care physicians. Such a short consultation length is likely to adversely affect patient healthcare and physician workload and stress.

Cross-cultural adaptation of the professional version of the Readiness for Interprofessional Learning Scale (RIPLS) in Japanese.

Interprofessional education (IPE) for healthcare professionals is important in Japan because of its rapidly aging population and increasingly complex healthcare needs. However, no tools have been validated in the Japanese context to evaluate healthcare professionals' attitudes towards, or readiness for, IPE. The professional version of the Readiness for Interprofessional Learning Scale (RIPLS) with 23 items was selected for cross-cultural adaptation because it has been widely used internationally and a Japanese edition of the student version has already been developed. We followed a guideline for cross-cultural adaptation and subsequently conducted factor analysis with 368 responses from over 16 professions. Face and content validity was confirmed through the translation process. We obtained four factors with good internal consistency (Cronbach's alpha > 0.7). These results were similar to those of the original UK study, apart from one factor being divided into two different factors in this study. Studies are required to further confirm the rigor and generalisability of the results; however, the Japanese RIPLS can be used to evaluate healthcare professionals' attitudes towards IPE, which can eventually lead to a better IPE development for healthcare professionals in Japan.

The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: a systematic review of views from patients, carers and health-care professionals.

BACKGROUND: Primary care has the potential to play significant roles in providing effective palliative care for non-cancer patients. AIM: To identify, critically appraise and synthesise the existing evidence on views on the provision of palliative care for non-cancer patients by primary care providers and reveal any gaps in the evidence. DESIGN: Standard systematic review and narrative synthesis. DATA SOURCES: MEDLINE, Embase, CINAHL, PsycINFO, Applied Social Science Abstract and the Cochrane library were searched in 2012. Reference searching, hand searching, expert consultations and grey literature searches complemented these. Papers with the views of patients/carers or professionals on primary palliative care provision to non-cancer patients in the community were included. The amended Hawker's criteria were used for quality assessment of included studies. RESULTS: A total of 30 studies were included and represent the views of 719 patients, 605 carers and over 400 professionals. In all, 27 studies are from the United Kingdom. Patients and carers expect primary care physicians to provide compassionate care, have appropriate knowledge and play central roles in providing care. The roles of professionals are unclear to patients, carers and professionals themselves. Uncertainty of illness trajectory and lack of collaboration between health-care professionals were identified as barriers to effective care. CONCLUSIONS: Effective interprofessional work to deal with uncertainty and maintain coordinated care is needed for better palliative care provision to non-cancer patients in the community. Research into and development of a best model for effective interdisciplinary work are needed.