Stakeholder engagement in the development of an upper extremity outcome measure for children with rare musculoskeletal conditions
Abstract Background Upper extremity (UE) involvement is prevalent in 73% of individuals with arthrogryposis multiplex congenita (AMC), yet no AMC-specific outcome measure exists. When developing a measure specific to a population with a rare musculoskeletal condition, clinicians’ and patients’ persp...
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| Format: | Article |
| Language: | English |
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BMC
2023-08-01
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| Series: | Research Involvement and Engagement |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s40900-023-00479-6 |
| _version_ | 1797555747588931584 |
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| author | Caroline Elfassy Lisa Wagner Johanne Higgins Kathleen Montpetit Laurie Snider Noémi Dahan-Oliel |
| author_facet | Caroline Elfassy Lisa Wagner Johanne Higgins Kathleen Montpetit Laurie Snider Noémi Dahan-Oliel |
| author_sort | Caroline Elfassy |
| collection | DOAJ |
| description | Abstract Background Upper extremity (UE) involvement is prevalent in 73% of individuals with arthrogryposis multiplex congenita (AMC), yet no AMC-specific outcome measure exists. When developing a measure specific to a population with a rare musculoskeletal condition, clinicians’ and patients’ perspectives and involvement is a crucial and necessary step. This study sought to determine the most clinically useful items for an outcome measure of UE function for children with AMC as defined by caregivers and clinicians. Methods To ensure the perspectives and needs of caregivers of children with AMC and clinicians were considered in the development of the UE measure for AMC, a Nominal Group technique (NGT) with caregivers of children with AMC (phase 1) followed by a three-round survey with clinicians (phase 2) were carried out. Results Phase 1: Eleven individuals participated in the nominal group technique and identified 32 items. The most important items were Picking up an object (n = 11), Eating (n = 10), Reaching mouth (n = 10), Getting out of bed (n = 10). Phase 2: Invitations to participate to an online survey was sent to 47 experts in the field of AMC, 20 participants completed round 1, 15 completed round 2 and 13 completed round 3. Throughout the survey, participants were asked about movement required to screen the UE, essential domains to be included in the measure, establishing a scoring guide and identifying tasks associated with joint motion and position. Conclusion A preliminary version of an UE AMC-specific outcome measure was developed with the help of caregivers’ perspectives and expert opinions. |
| first_indexed | 2024-03-10T16:53:01Z |
| format | Article |
| id | doaj.art-82c6cf62bdfb49848b94955a4282faca |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-03-10T16:53:01Z |
| publishDate | 2023-08-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-82c6cf62bdfb49848b94955a4282faca2023-11-20T11:15:22ZengBMCResearch Involvement and Engagement2056-75292023-08-019111110.1186/s40900-023-00479-6Stakeholder engagement in the development of an upper extremity outcome measure for children with rare musculoskeletal conditionsCaroline Elfassy0Lisa Wagner1Johanne Higgins2Kathleen Montpetit3Laurie Snider4Noémi Dahan-Oliel5Faculty of Medicine, School of Physical and Occupational Therapy, McGill UniversityShriners Hospitals for ChildrenUniversité de Montréal, École de RéadaptationClinical Research Department, Shriners Hospital for Children –CanadaFaculty of Medicine, School of Physical and Occupational Therapy, McGill UniversityFaculty of Medicine, School of Physical and Occupational Therapy, McGill UniversityAbstract Background Upper extremity (UE) involvement is prevalent in 73% of individuals with arthrogryposis multiplex congenita (AMC), yet no AMC-specific outcome measure exists. When developing a measure specific to a population with a rare musculoskeletal condition, clinicians’ and patients’ perspectives and involvement is a crucial and necessary step. This study sought to determine the most clinically useful items for an outcome measure of UE function for children with AMC as defined by caregivers and clinicians. Methods To ensure the perspectives and needs of caregivers of children with AMC and clinicians were considered in the development of the UE measure for AMC, a Nominal Group technique (NGT) with caregivers of children with AMC (phase 1) followed by a three-round survey with clinicians (phase 2) were carried out. Results Phase 1: Eleven individuals participated in the nominal group technique and identified 32 items. The most important items were Picking up an object (n = 11), Eating (n = 10), Reaching mouth (n = 10), Getting out of bed (n = 10). Phase 2: Invitations to participate to an online survey was sent to 47 experts in the field of AMC, 20 participants completed round 1, 15 completed round 2 and 13 completed round 3. Throughout the survey, participants were asked about movement required to screen the UE, essential domains to be included in the measure, establishing a scoring guide and identifying tasks associated with joint motion and position. Conclusion A preliminary version of an UE AMC-specific outcome measure was developed with the help of caregivers’ perspectives and expert opinions.https://doi.org/10.1186/s40900-023-00479-6Stakeholder engagementOutcome measure developmentRare musculoskeletal conditionUpper extremity |
| spellingShingle | Caroline Elfassy Lisa Wagner Johanne Higgins Kathleen Montpetit Laurie Snider Noémi Dahan-Oliel Stakeholder engagement in the development of an upper extremity outcome measure for children with rare musculoskeletal conditions Research Involvement and Engagement Stakeholder engagement Outcome measure development Rare musculoskeletal condition Upper extremity |
| title | Stakeholder engagement in the development of an upper extremity outcome measure for children with rare musculoskeletal conditions |
| title_full | Stakeholder engagement in the development of an upper extremity outcome measure for children with rare musculoskeletal conditions |
| title_fullStr | Stakeholder engagement in the development of an upper extremity outcome measure for children with rare musculoskeletal conditions |
| title_full_unstemmed | Stakeholder engagement in the development of an upper extremity outcome measure for children with rare musculoskeletal conditions |
| title_short | Stakeholder engagement in the development of an upper extremity outcome measure for children with rare musculoskeletal conditions |
| title_sort | stakeholder engagement in the development of an upper extremity outcome measure for children with rare musculoskeletal conditions |
| topic | Stakeholder engagement Outcome measure development Rare musculoskeletal condition Upper extremity |
| url | https://doi.org/10.1186/s40900-023-00479-6 |
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