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Outcome measures used and psychometrically tested in children with upper limb loss or difference: a scoping review
Abigail Stepnitz1, Sara Morgan2,3,4, Caroline Gormley3
1Department of Orthotics/Prosthetics, Moira Tobin Wickes Orthotics Program, Ann & Robert H Lurie Children's Hospital of Chicago, Chicago, Illinois, USA.
Introduction:
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.
Methods And Analysis:
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.
Ethics And Dissemination:
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.
Registration:
The scoping review that applies this protocol has been registered on Open Science Framework (https://doi.org/10.17605/OSF.IO/7UGWB).
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