悪性神経膠腫患者のEnd of Life Discussionに関する記述的研究

京都大学新制・課程博士博士(人間健康科学)甲第23385号人健博第92号新制||人健||6(附属図書館)京都大学大学院医学研究科人間健康科学系専攻(主査)教授 田村 恵子, 教授 稲富 宏之, 教授 溝脇 尚志学位規則第4条第1項該当Doctor of Human Health SciencesKyoto UniversityDFA

Lived experience in patients with recurrent glioblastoma in Japan: A narrative study

Glioblastoma (GBM) is well known to have one of the poorest prognoses among all cancers. Patients with GBM in progression-free survival (PFS) may be relatively stable and can often maintain their quality of life. Thus, PFS is a desirable goal. In Japan, the median PFS is 11 months. It is difficult to grasp a patient\u27s thoughts and hopes when, after PFS, they are readmitted due to recurrence or acute deterioration. Therefore, this study aimed to describe the lived experience of illness in patients with recurrent GBM, focusing on PFS. We enrolled five patients into the study; however, only four patients completed data collection. Data were collected using semi-structured interviews. We also conducted a thematic narrative analysis. As a result, we generated one overall theme: Even in vulnerable and constrained daily lives, the aim was gaining a sense of stability—and maintaining it steadily—as far as possible, on their own. That sense of stability is fragile so that maintaining equilibrium is a precarious enterprise. Moreover, in PFS, participants were trying to maintain equilibrium by reevaluating themselves and sometimes giving up something, although they received support from people around them. We infer that it is important for nurses to assess and understand the fluctuations in that sense of stability through continuous involvement with patients. An interdisciplinary approach and lateral integration of care are important to meet the needs of GBM patients. This understanding will lead to nursing supports that help patients live with stability, pride, and dignity

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 3512 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