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

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.