Development of a Japanese version of the Advance Care Planning Engagement Survey: Examination of its reliability and validity.

OBJECTIVES: The importance of supporting advance care planning (ACP) by healthcare professionals is recognized worldwide, and assessing the outcomes, such as people's understanding and readiness for ACP, using an appropriate instrument is essential. We, therefore, developed a Japanese version of the Advance Care Planning Engagement Survey (ACP Engagement Survey; 15 items, 9 items, and 4 items), an international scale for assessing the progress of the ACP, and examined its validity and reliability. METHODS: The ACP Engagement Survey was translated into Japanese, back-translated, and culturally adapted, and the final version was reviewed by the author of the original version. Data on basic demographic information and ACP-related experiences were simultaneously collected as external criteria in an online survey of older adults with chronic diseases. The Cronbach's alpha was calculated to assess its internal consistency, and a retest was performed three days later to calculate the intra-class correlation coefficients (ICCs). RESULTS: A total of 200 respondents (mean age 70; 9.5% female) were included in the analysis. None of the items showed a ceiling effect, but several items did exhibit a floor effect. The factor structure was the same 2-factor structure as the original version, and both factors exhibited a high cumulative contribution rate. The Cronbach's alphas were 0.94 (15-item version), 0.91 (9-item version), and 0.95 (4-item version), and ICCs were of 0.88 (15-item version), 0.9 (9-item version), and 0.84 (4-item version). SIGNIFICANCE OF RESULTS: The Japanese version of the ACP Engagement Survey was confirmed to have very good reliability regarding both internal consistency and test-retest reliability. Together with the result of the item analysis, we can conclude that the Japanese version of the ACP Engagement Survey is sufficiently reliable to be utilized in interventional studies, and it has acceptable content validity, construct validity, and criterion-related validity.

Development and Effectiveness of an End-of-Life Care Program for Faculty in the Critical Care Field: A Randomized Controlled Trial.

In Japan, end-of-life care education in the critical care field is still insufficient. Therefore, this study developed and verified the effectiveness of an end-of-life care program for faculty in the critical care field in Japan through a randomized controlled trial. The study was implemented from September 2016 to March 2017. Participants were 82 college teaching staff and nurses working in the critical care field. Six months after the program, data of 37 members (84.1%) of the intervention and 39 members (88.6%) of the control group were analyzed. The results demonstrated that the primary end point-"confidence in teaching" 6 months after program completion-differed significantly between the 2 groups (2.5 [0.69] in the intervention group vs 1.8 [0.46] in the control group, P < .001). It is suggested that attending this program will give faculty in the field of critical care continued confidence in their end-of-life care teaching, as well as allow them to implement end-of-life care teaching in their field.

Strategies to Understand What Matters to Advanced Cancer Patients in Advance Care Planning: A Qualitative Study Using the Lifeline Interview Method.

Little is known about how health care providers should conduct advance care planning to identify the values of East Asian patients who have serious illnesses. This study aims to explore whether and how patients from an East Asian culture and with advanced cancer express their values and priorities when nurses utilize the lifeline interview method to enable patients to reflect on their life trajectories and if it can bridge advance care planning discussions. Data obtained from individual, semistructured interviews of 11 patients with advanced lung cancer were analyzed using qualitative content analysis. Seven main themes were identified: (1) treatment and essential elements to maintaining everyday life, (2) beliefs regarding and support for being "myself", (3) emotional ups and downs in response to physical condition, (4) competency to cope, (5) what I want to do "now" to achieve my goals, (6) goals that bring hope for life, and (7) wishes and preferences for end-of-life decision-making. Results suggest that the lifeline interview method is an excellent means for nurses and other health care professionals to elicit patients' values and priorities. Moreover, it bridges advance care planning discussions to reflect on what matters to patients in future palliative care.

Developing an Instrument to Assess the Readiness for Advance Care Planning.

CONTEXT: In recent times, advance care planning for patients' end-of-life care preferences has attracted much attention worldwide. OBJECTIVES: To develop the Readiness for Advance Care Planning (RACP) Scale. METHODS: Participants included 624 Japanese citizens who were registered with a web-based survey company as of February 2019. Items regarding the process of advance care planning (ACP) were developed based on a literature review and expert panel discussions. The expert panel included nine experts and practitioners in the field of end-of-life care. Construct validity, concurrent validity, internal consistency, and test-retest reliability were evaluated. RESULTS: Initially, 37 items were collected. Examination of the floor effect, item-total, good-poor analysis, and exploratory factor analysis yielded a five-factor model with 28 items. The goodness of fit of the model was GFI = 0.80, CFI = 0.91, and RMSEA = 0.08. The concurrent validity was statistically significant (rs = 0.26-0.45, ps < 0.001). Cronbach's alpha for the overall scale was 0.95. The corresponding values for the subscales ranged from 0.90 to 0.97. The intraclass correlation coefficients indicating test-retest reliability was 0.66 (P < 0.001) for the total scale and ranged from 0.52-0.65 for the five subscales. CONCLUSIONS: The validity and reliability of the scale were generally acceptable. The RACP is an appropriate instrument to evaluate the level of readiness for ACP behaviors among people of various generations at every health stage. More studies are needed to examine the clinical utility of the RACP, both nationally and internationally.

Definition and Recommended Cultural Considerations for Advance Care Planning in Japan: A Systematic Review.

Although Delphi studies in Western countries have provided a consensus for practices pertaining to advance care planning (ACP), their findings may not be applicable to Asian countries with distinct, family-oriented cultures. This systematic review aimed to synthesize the definitions of and evidence for ACP and analyze recommended practices in Japan. We conducted a systematic review using narrative synthesis in December 2018. Key words were searched from Ichushi-Web by NPO Japan Medical Abstracts Society, Citation Information by the National Institute of Informatics, and Japanese Institutional Repositories Online databases. In addition, in August 2019, we conducted hand searching using Google Scholar and Google. We included original Japanese articles that addressed factors regarding ACP (e.g. definitions, elements, roles and tasks, and timing of ACP). Data were synthesized using thematic analysis. The study protocol was registered prospectively (PROSPERO: CRD42020152391). Of the 3,512 studies screened, 27 were included: 22 quantitative and 5 qualitative. Five-position statements/guidelines were added by hand searching. Definitions and several distinct practice patterns of ACP and the importance of families' roles were identified. Unique recommendations addressed the importance of properly eliciting patients' preferences that are the best for both patients and families, engaging the public to raise awareness of ACP, and developing policies and guidelines for ACP. We identified the definition of and unique recommendations for ACP based on Japanese cultural values and norms. Further research is needed to evaluate the recommendations provided in this systematic review.

A descriptive analysis of end-of-life discussions for high-grade glioma patients.

BACKGROUND: End-of-life discussions (EOLDs) in patients with high-grade glioma (HGG) have not been well described. Therefore, this study examined the appropriateness of timing and the extent of patient involvement in EOLDs and their impact on HGG patients. METHODS: A cross-sectional survey was conducted among 105 bereaved families of HGG patients at a university hospital in Japan between July and August 2019. Fisher's exact test and the Wilcoxon rank-sum test were used to assess the association between patient participation in EOLDs and their outcomes. RESULTS: In total, 77 questionnaires were returned (response rate 73%), of which 20 respondents replied with refusal documents. Overall, 31/57 (54%) participated in EOLDs at least once in acute hospital settings, and a significant difference was observed between participating and nonparticipating groups in communicating the patient's wishes for EOL care to the family (48% vs 8%, P = .001). Moreover, >80% of respondents indicated that the initiation of EOLDs during the early diagnosis period with patients and families was appropriate. Most EOLDs were provided by neurosurgeons (96%), and other health care providers rarely participated. Additionally, patient goals and priorities were discussed in only 28% of the EOLDs. Patient participation in EOLDs was not associated with the quality of EOL care and a good death. CONCLUSIONS: Although participation in EOLDs is relatively challenging for HGG patients, this study showed that participation in EOLDs may enable patients to express their wishes regarding EOL care. It is important to initiate EOLDs early on through an interdisciplinary team approach while respecting patient goals and priorities.

Development of an Instrument for Evaluating Nurses' Knowledge and Attitude Toward End-of-Life Care: End-of-Life Nursing Education Consortium-Japan Core Quiz.

This study aimed to develop a scale focusing on knowledge and attitudes toward palliative care and end-of-life care for nurses and to confirm the scale's validity and reliability. We conducted a self-administered questionnaire survey with 1745 nurses of 10 hospitals all over Japan. We also examined the test-retest reliability of items for 205 of the nurses, 2 weeks after the first survey was completed. We used item-response theory, factor analysis, and intraclass correlation coefficients. The response rate was 44.5% (n = 762). Ninety items in 9 domains about knowledge of palliative care and end-of-life care were selected by using item-response theory. For knowledge items, Kuder-Richardson-20 was 0.85, and intraclass correlation coefficient was 0.84 in all domains. Ten items in 3 domains about attitudes toward palliative care and end-of-life care were selected by using exploratory factor analysis. For attitude items, Cronbach's α coefficient was .90, and intraclass correlation coefficient was 0.80 in all domains. The developed scale, named the End-of-Life Nursing Education Consortium-Japan Core Quiz, has sufficient validity and reliability. This scale may contribute to assessing the effectiveness of the End-of-Life Nursing Education Consortium-Japan Core Curriculum Nursing Education Program in Japan.

Providing Palliative Care Education: Showcasing Efforts of Asian Nurses.

Most of the world's population lives in Asia. Prevention and detection of cancer, as well as ensuring equitable access to cancer care for all Asians remains a major public health issue and requires governmental involvement and dedicated resources. Palliative care, a medical and nursing specialty, promotes holistic attention to suffering and provides compassionate and interdisciplinary care to the most vulnerable in all societies-those with serious illness. It is nurses who provide the majority of care for patients with cancer, as no other healthcare professional spends more time at the bedside or out in the community assessing and managing these patients and their families. The purpose of this article is to showcase nursing leaders throughout Asia who are receiving palliative care education, educating their colleagues in this care, improving clinical practice, participating in the development of healthcare policies, and advocating for this care.

Development of a standard for hospital-based palliative care consultation teams using a modified Delphi method.

Although palliative care consultation teams are rapidly being disseminated throughout Japan as a result of government policy, the role of these teams has not been standardized. The aim of this study was to develop a hospital-based palliative care consultation team standard. We adopted a modified Delphi method to develop a standard. Twenty-seven multiprofessional panelists were selected according to two criteria: adequate experience as part of a palliative care consultation team and representative of 16 palliative care-related organizations. Panelists rated the appropriateness of 33 statements in a provisional standard, which was generated by the authors, using a nine-point Likert-type scale in a first-round survey. We set two criteria for agreement: the median value was 8 or more, and the difference between the minimum and maximum was 4 or less. There were 15 disagreements in the first-round survey. Based on discussions through e-mails and a panel meeting, these 15 statements were dealt with as follows: one was rejected, one was combined with another statement, three were unmodified, and 10 underwent minor revisions. Moreover, two statements that generated agreement were divided into two statements each. Consequently, the number of statements was 37. In a second-round survey, three statements engendered disagreement and were modified. At the end of the process, there were 37 statements in four areas: "philosophy and policy," "structure for care provision," "contents of activities," and "quality assurance and care improvements." This standard may be useful as a clinical activity guide as well as a method to evaluate palliative care consultation teams.