Michelle A. James, M.D.
Assistant Chief of Orthopaedic Surgery, Shriners Hospital for Children Northern California Clinical Professor of Orthopaedic Surgery, University of California Davis School of Medicine
Anita M. Bagley, Ph.D.
Co-Director, Motion Analysis Laboratory, Shriners Hospital for Children Northern California
Assistant Clinical Professor of Orthopaedic Surgery, University of California Davis School of Medicine
Unilateral Congenital Below Elbow Deficiency Study Group*1
Shriners Hospitals for Children
A prosthesis is assumed to be necessary to improve function for children with unilateral congenital below elbow deficiency (UCBED). However, many children with UCBED prefer not to wear a prosthesis for reasons that are unclear to clinicians.
A multi-center outcomes study was carried out to test the quality of lifeand function of 494 children with UCBED, 68% of whom wear prostheses. This report presents the results of the PedsQL, a health related quality of lifequestionnaire; the Pediatric Orthopaedic Data Collection Instrument (PODCI), a musculoskeletal health questionnaire; and the Unilateral Below Elbow Test (UBET), a function test that is administered to children with UCBED with and/or without their prosthesis. The mean scores on the PedsQL and PODCI were compared for prosthesis wearers versus non-wearers, and for children with UCBED versus the general population. (1,2)
Prosthesis wearers scored higher than non-wearers on the PedsQL School Domain. Prosthesis wear was not associated with any other differences in PedsQL or PODCI scores. Children with UCBED scored the same as or better than the general population on all PedsQL Domains. They scored lower than the general population on the UE Function Domain of the PODCI, but adolescents with UCBED scored higher on the Happiness Domain. For all other PODCI domains there were no significant differences. Non-wearers and wearers without their prosthesis performed either the same as or significantly better than wearers with their prosthesis on the UBET.
1 * Participants from 10 Shriners Hospitals for Children: Erie (Katherine Brasington OTR, Sharon McConnell MS), Greenville (Lisa V. Wagner OTR), Houston (Joanne Libertore OTR, Becky Ligon OTR, Elroy Sullivan PhD), Los Angeles (Joanna Patton OTR, Joanne Shida OTR), Montreal (Kathleen Montpetit BScOT), Northern California (Leslie Clawson MSW, Cheryl Hanley OTR, Carrie Risi-Hart OTR), Philadelphia (Susan DuffOTR, Cheryl S. Lutz OTR), Springfield (Elaine Charest OTR), St. Louis (Loray A. Dailey, OTR), and Twin Cities (Wendy A. Tomhave OTR)
Children with UCBED may abandon prostheses because their function without them is close to normal and the functional benefits conferred by prostheses are marginal.
Hunsaker FG, CioffiDA, Amadio PC, Wright JG, Caughlin B. The American Academy of Orthopaedic Surgeons outcomes instruments: normative values from the general population. Journal of Bone and Joint Surgery 2002, 84A: 208-15.
Varni JW, Burwinkle TM, Seid M, Skarr D: The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambulatory Pediatrics 2003, 3:329- 41.