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

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.

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.

Eight PICUs in Japan.

We recruited 231 clinicians (112 physicians, 119 nurses) who provided end-of-life care for 65 children in the PICU and their families.

None.

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.

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.