Department of Child Health Nursing, Tohoku University School of Medicine, Miyagi, Japan.
Miyagi Children's Hospital, Miyagi, Japan.
J Palliat Med. 2020 Jan;23(1):82-89. doi: 10.1089/jpm.2018.0598. Epub 2019 Jul 29.
Assessing the quality of life (QoL) of children receiving end-of-life (EoL) care through evaluations by the children and their bereaved families is challenging; presently, there is no QoL assessment measure that is appropriate for use in pediatric EoL and/or palliative care. To develop and test a proxy rating scale (the "Good Death Inventory for Pediatrics," GDI-P) for the QoL of pediatric cancer patients receiving EoL care, evaluated from the nurse's perspective, as well as a short version of the scale. The GDI-P was developed based on previous studies. After initial testing, it was distributed to hospitals across Japan, where nurses in charge of patients with childhood cancer receiving EoL care used the scale to evaluate a patient retrospectively. To examine inter-rater reliability, we encouraged two nurses to evaluate one patient. The GDI-P was modified on the basis of the responses, and the validity and reliability were measured. In total, 85 questionnaires were completed, including 32 pairs of responses from two nurses evaluating one patient. In addition, 47 retest questionnaires were returned. The final, modified GDI-P comprised eight factors with 22 items and showed high convergent and discriminant validity, scaling success rates for each item and factor, and Cronbach's α values. A short version of GDI-P was prepared, comprising eight representative items. The final GDI-P was confirmed to have adequate reliability and validity. The QoL scale developed in this study should provide useful outcome evaluation criteria for assessing the EoL care of pediatric cancer patients.
评估接受终末期（EoL）护理的儿童的生活质量（QoL），通过儿童及其丧亲家庭的评估是具有挑战性的；目前，没有适合儿科 EoL 和/或姑息治疗的 QoL 评估方法。本研究旨在开发和测试一种从护士角度评估接受 EoL 护理的儿科癌症患者 QoL 的代理评分量表（“儿科良好死亡量表”，GDI-P），以及该量表的简短版本。GDI-P 是基于以前的研究开发的。初步测试后，将其分发给日本各地的医院，负责接受儿童癌症 EoL 护理的护士使用该量表对患者进行回顾性评估。为了检查评分者间的可靠性，我们鼓励两名护士评估一名患者。根据反馈对 GDI-P 进行了修改，并测量了有效性和可靠性。共完成了 85 份问卷，包括两名护士对一名患者的 32 对回答。此外，还返回了 47 份重测问卷。最终修改后的 GDI-P 由 8 个因素组成，包含 22 个项目，具有较高的聚合和区分效度、每个项目和因素的量表成功率以及 Cronbach's α 值。GDI-P 的简短版本也已准备好，包含 8 个有代表性的项目。最终的 GDI-P 被证实具有足够的可靠性和有效性。本研究中开发的 QoL 量表应能为评估儿科癌症患者的 EoL 护理提供有用的结局评估标准。
