Pelke Sophie, Wager Julia, Claus Benedikt B, Stening Kathrin, Zernikow Boris, Reuther Mandira
Pediatric Palliative Care Center Datteln, Children's and Adolescents' Hospital Datteln, 45711 Datteln, Germany.
Department of Children's Pain Therapy and Paediatric Palliative Care, Faculty of Health, School of Medicine, Witten/Herdecke University, 58448 Witten, Germany.
Children (Basel). 2021 Oct 11;8(10):905. doi: 10.3390/children8100905.
Outcome measurement in pediatric palliative care (PPC) is receiving increasing attention. The FACETS-OF-PPC, a multidimensional outcome measure for children with severe neurological impairment, has been developed and partly validated. This study aimed to conclude the validity of the German version of the FACETS-OF-PPC. A multicenter prospective study with two points of measurement has been conducted, employing confirmatory factor analyses, reliability analyses, and analyses to evaluate the tool's sensitivity to change. Overall, 25 inpatient and outpatient teams throughout Germany recruited = 227 parents of affected children and = 238 professional caregivers. Participants filled out the FACETS-OF-PPC on the admission of a child to a palliative care service and at discharge from inpatient settings or two months after admission to outpatient services. The analyses revealed the questionnaire needing further adaption. Now, 17 of the original 34 items contribute to the construction of the questionnaire scales. The other items remain part of the questionnaire and may be evaluated descriptively. Furthermore, the FACETS-OF-PPC has moderate to appropriate internal consistency and is sensitive to change. Creating an outcome measure with good psychometric properties for the vulnerable population of children with severe neurological impairment appears extremely difficult. Considering these challenges, the FACETS-OF-PPC demonstrates adequate psychometric properties.
儿科姑息治疗（PPC）中的结局测量正受到越来越多的关注。FACETS - OF - PPC是一种针对严重神经功能障碍儿童的多维结局测量工具，已经开发并部分得到验证。本研究旨在总结德语版FACETS - OF - PPC的有效性。开展了一项具有两个测量点的多中心前瞻性研究，采用验证性因素分析、可靠性分析以及评估该工具对变化敏感性的分析。总体而言，德国各地的25个住院和门诊团队招募了n = 227名受影响儿童的家长和n = 238名专业护理人员。参与者在儿童进入姑息治疗服务机构时以及从住院环境出院时或进入门诊服务机构两个月后填写FACETS - OF - PPC。分析表明该问卷需要进一步调整。目前，原始34个条目中的17个条目用于构建问卷量表。其他条目仍作为问卷的一部分，可进行描述性评估。此外，FACETS - OF - PPC具有中等至适当的内部一致性，并且对变化敏感。为严重神经功能障碍儿童这一弱势群体创建具有良好心理测量特性的结局测量工具似乎极其困难。考虑到这些挑战，FACETS - OF - PPC表现出足够的心理测量特性。
