Pelke Sophie, Wager Julia, Claus Benedikt B, Zernikow Boris, Reuther Mandira
Pediatric Palliative Care Center Datteln, Children's and Adolescents' Hospital Datteln, Datteln, Germany.
Department of Children's Pain Therapy and Paediatric Palliative Care, Faculty of Health, School of Medicine, Witten/Herdecke University, Witten, Germany.
Palliat Med. 2021 Mar;35(3):611-620. doi: 10.1177/0269216320975626. Epub 2020 Dec 18.
Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments.
The aim of this study was to develop and validate a family-centered multidimensional outcome measure for pediatric palliative care patients with severe neurological impairment that encompasses the entire unit of care.
Based on results of a qualitative study, the questionnaire was developed by consensus-based generation of questions. It was validated in a multicenter prospective study employing exploratory and confirmatory factor analyses as well as reliability and item analyses.
A total of 11 pediatric palliative care teams across Germany aided in the recruitment of study participants. Questionnaires were answered by 149 parents of children with severe neurological impairment and 157 professional caregivers.
The exploratory factor analysis of parent data revealed a 6-factor structure of the questionnaire representing: symptoms, the child's social participation, normalcy, social support, coping with the disease and caregiver's competencies. This structure was verified by a confirmatory factor analysis of professional caregiver data. Five separate items regarding siblings, partners, and further symptoms not applicable for all patients were added to ensure full multidimensionality.
A validated outcome tool for severely neurologically impaired pediatric palliative care patients, the FACETS-OF-PPC, now exists. Due to its concise length and appropriate psychometric properties, it is well suited for clinical application.
儿科姑息治疗中的综合结局测量聚焦于整个照护单元，即患病儿童及其家庭，这对于描述治疗效果至关重要。尽管其相关性日益增加，但对于该领域最大的患者群体，即患有严重神经功能障碍的儿童，尚无合适的多维结局测量方法。
本研究的目的是为患有严重神经功能障碍的儿科姑息治疗患者开发并验证一种以家庭为中心的多维结局测量方法，该方法涵盖整个照护单元。
基于一项定性研究的结果，通过基于共识生成问题来开发问卷。在一项多中心前瞻性研究中对其进行了验证，该研究采用了探索性和验证性因素分析以及信度和项目分析。
德国共有11个儿科姑息治疗团队协助招募研究参与者。149名患有严重神经功能障碍儿童的家长和157名专业照护者回答了问卷。
对家长数据的探索性因素分析揭示了问卷的六因素结构，分别代表：症状、儿童的社会参与、正常状态、社会支持、应对疾病以及照护者能力。专业照护者数据的验证性因素分析证实了这一结构。另外增加了五个关于兄弟姐妹、伴侣以及并非所有患者都适用的其他症状的单独项目，以确保全面的多维性。
现在已有一种经过验证的针对患有严重神经功能障碍的儿科姑息治疗患者的结局工具，即FACETS - OF - PPC。由于其篇幅简洁且心理测量特性合适，它非常适合临床应用。
