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Japanese Version of the Quality of Dying and Death in the PICU Instrument: Development and Validation in Eight Centers in Japan

Takayama A, Kawaguchi A, Irie W, Miyashita M, Yamaguchi T, Yotani N, Shiwaku H · Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2026

Objectives: The quality of dying and death (QODD) of children on the PICU is essential for them, their families, and carers at the end-of-life. Currently, there are no standard instruments for measuring QODD in PICUs in Japan (J). We have developed a Japanese version of PICU-QODD (PICU-QODD-J) instrument, which has been culturally adapted to the Japanese context, and evaluated its psychometric validity. Design: The study comprised two phases: 1) development of the PICU-QODD-J instrument, conducted with input from experts, clinicians, and bereaved families and 2) a multicenter, prospective, cross-sectional validation involving PICU clinicians. Data for the validation phase were collected between May 2023 and June 2024. Setting: Eight PICUs in Japan. Participants: We recruited 231 clinicians (112 physicians, 119 nurses) who provided end-of-life care for 65 children in the PICU and their families. Interventions: None. Measurements and Main Results: The PICU-QODD-J instrument was developed through forward-backward translation, reviewed by a panel of five experts, and evaluated by 12 clinicians and seven bereaved family members. The PICU-QODD-J instrument comprises 21 items and demonstrated acceptable internal consistency (Cronbach’s α = 0.92) and good test-retest reliability with intraclass correlation coefficient of 0.77 (95% CI, 0.64–0.85). The inter-rater reliability (IRR) was low (0.09 [95% CI, 0.06–0.13]). Standardized PICU-QODD-J instrument scores showed moderate positive correlations (r = 0.42–0.57; p < 0.001) with evaluations of overall quality of end-of-life care, quality of the moment of death, and fulfillment of family needs, supporting good construct validity. Conclusions: The PICU-QODD-J instrument demonstrated good reliability and validity and can be used to assess and improve end-of-life care in PICUs in Japan. However, given the low IRR, evaluations should be interpreted from multiple perspectives rather than a single assessment.

DOI
10.1097/PCC.0000000000003945

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Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.