Stepnitz Abigail, Morgan Sara, Gormley Caroline, Schiller Jessica, Munger Meghan, Laine Jennifer, Hall Michelle J
Department of Orthotics/Prosthetics, Moira Tobin Wickes Orthotics Program, Ann & Robert H Lurie Children's Hospital of Chicago, Chicago, Illinois, USA.
Research Department, Gillette Children's, Saint Paul, Minnesota, USA.
BMJ Open. 2025 Jul 24;15(7):e100151. doi: 10.1136/bmjopen-2025-100151.
Children with upper limb loss or difference (ULLD) require individualised and developmentally appropriate clinical care. To guide this specialised care, outcome measures can be used to assess important constructs, such as physical function, health-related quality of life (HRQoL) and satisfaction with medical treatments and services. However, there is limited research available on which outcome measures are used to assess these constructs and whether they have been psychometrically assessed in children with ULLD who may or may not use a prosthesis. Thus, the purpose of this scoping review is (1) to determine which outcome measures are used to assess physical function, HRQoL and satisfaction in paediatric patients with ULLD and (2) to identify articles that include children with ULLD in psychometric assessments of these outcome measures. Findings of these studies will be reported. This review will inform healthcare professionals on which outcome measures assessing function, HRQoL and satisfaction have been psychometrically tested for use in children with ULLD. It will also inform future research on outcome measurement in this population.
A two-phase scoping review will be conducted in which PubMed, Web of Science and CINAHL will be searched: first, to identify which outcome measures are used to assess physical function, HRQoL and satisfaction in children with ULLD and, second, to determine whether those measures have been psychometrically assessed for use in this population. Teams of two reviewers will review articles for eligibility and extract information from eligible articles. Tie-breaking will be conducted by a third reviewer. Narrative summaries will be used to describe the findings of this scoping review.
No ethical approval is needed. The results of the review will be submitted for publication in a peer-reviewed journal and presented at relevant conferences.
The scoping review that applies this protocol has been registered on Open Science Framework (https://doi.org/10.17605/OSF.IO/7UGWB).
上肢缺失或有差异（ULLD）的儿童需要个性化且符合其发育阶段的临床护理。为指导这种专业护理，可使用结局指标来评估重要概念，如身体功能、健康相关生活质量（HRQoL）以及对医疗治疗和服务的满意度。然而，关于哪些结局指标用于评估这些概念以及它们是否在可能使用或不使用假肢的ULLD儿童中进行了心理测量学评估的研究有限。因此，本综述的目的是：（1）确定哪些结局指标用于评估ULLD儿科患者的身体功能、HRQoL和满意度；（2）识别在这些结局指标的心理测量学评估中纳入了ULLD儿童的文章。将报告这些研究的结果。本综述将告知医疗保健专业人员哪些评估功能、HRQoL和满意度的结局指标已在ULLD儿童中进行了心理测量学测试以供使用。它还将为该人群未来的结局测量研究提供信息。
将进行两阶段的综述，其中将检索PubMed、科学网和CINAHL：首先，确定哪些结局指标用于评估ULLD儿童的身体功能、HRQoL和满意度；其次，确定这些指标是否已在该人群中进行了心理测量学评估。由两名评审员组成的团队将审查文章的资格并从符合条件的文章中提取信息。如有争议将由第三名评审员进行裁决。将使用叙述性总结来描述本综述的结果。
无需伦理批准。综述结果将提交至同行评审期刊发表，并在相关会议上展示。
应用本方案的综述已在开放科学框架（https://doi.org/10.17605/OSF.IO/7UGWB）上注册。
