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The Journal of Bone and Joint Surgery (American). 2006;88:2356-2365.
doi:10.2106/JBJS.E.01146
© 2006 The Journal of Bone and Joint Surgery, Inc.
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Impact of Prostheses on Function and Quality of Life for Children with Unilateral Congenital Below-the-Elbow Deficiency

Michelle A. James, MD1, Anita M. Bagley, PhD1, Katherine Brasington, MHS, OTR/L2, Cheryl Lutz, MS, OTR/L3, Sharon McConnell, MS, CCRC2 and Fred Molitor, PhD4

1 Shriners Hospital for Children, Northern California, 2425 Stockton Boulevard, Sacramento, CA 95817. E-mail address for M.A. James: mjames{at}shrinenet.org
2 Shriners Hospital for Children, 1645 West 8th Street, Erie, PA 16505
3 Shriners Hospital for Children, 3551 North Broad Street, Philadelphia, PA 19140
4 ETR Associates, 2210 21st Street, Sacramento, CA 95818

Investigation performed at the Shriners Hospital for Children, Sacramento, California

NOTE: The authors acknowledge the assistance and support of the Shriners Hospitals UCBED Study Group, which includes, in addition to the authors: Lisa V. Wagner, OTR (Shriners Hospital for Children, Greenville); Joanne Libertore, OTR, Becky Ligon, OTR, and Elroy Sullivan, PhD (Shriners Hospital for Children, Houston); Joanna Patton, OTR, and Joanne Shida, OTR (Shriners Hospital for Children, Los Angeles); Kathleen Montpetit, BScOT (Shriners Hospital for Children, Montreal); Susan Anderson, Leslie Clawson, MSW, Cheryl Hanley, OTR, Joel Lerman, MD, and Carrie Risi-Hart, OTR (Shriners Hospital for Children, Northern California); Susan Duff, OTR (Shriners Hospital for Children, Philadelphia); Elaine Charest, OTR (Shriners Hospital for Children, Springfield); Loray A. Dailey, OTR, and Brian Pinkston, CP/LP (Shriners Hospital for Children, St. Louis); and Wendy A. Tomhave, OTR (Shriners Hospital for Children, Twin Cities).

In support of their research for or preparation of this manuscript, one or more of the authors received grants or funding from the Shriners Hospitals for Children Clinical Outcomes Studies Advisory Board (COSAB). None of the authors received payments or other benefits or a commitment or agreement to provide such benefits from a commercial entity. No commercial entity paid or directed, or agreed to pay or direct, any benefits to any research fund, foundation, educational institution, or other charitable or nonprofit organization with which the authors are affiliated or associated.

Background: Children with unilateral congenital below-the-elbow deficiency present a dilemma to clinicians. Parents want the child to have a prosthesis and, because it seems that the deficiency will cause functional problems, one is customarily prescribed for infants. Use of the prosthesis is then encouraged throughout childhood. However, these children frequently abandon the prosthesis. There are no evidence-based guidelines regarding prescription of prostheses or standard methods for assessing use and function.

Methods: A multicenter outcomes study was done to assess the quality of life and function of 489 children with a unilateral congenital below-the-elbow deficiency; 321 wore a prosthesis, and 168 did not. The Unilateral Below-the-Elbow Test (UBET) was designed, validated, and administered to these children along with several outcomes measures, including the Pediatric Outcomes Data Collection Instrument (PODCI), the Pediatric Quality of Life Inventory (PedsQL), and the Prosthetic Upper Extremity Functional Index (PUFI).

Results: Use of a prosthesis was not associated with any clinically relevant differences in PODCI or PedsQL scores. Non-wearers performed either the same as or better than wearers on the UBET. When queried (with use of the PUFI) about performance of various tasks, non-wearers scored themselves higher than wearers. Children with a unilateral congenital below-the-elbow deficiency scored the same as or higher than the general population on the PedsQL. They scored significantly lower than the general population on the PODCI Upper Extremity Physical Function Domain and higher on the Happiness Domain, but the differences were small.

Conclusions: Prostheses may help with social acceptance or may be useful as tools for specialized activities, but they do not appear to improve function or quality of life, which are nearly normal for children with unilateral congenital below-the-elbow deficiency regardless of whether they wear a prosthesis. These findings call into question the standard practices of fitting infants with prostheses and encouraging young children to wear the prosthesis.

Level of Evidence: Therapeutic Level II. See Instructions to Authors for a complete description of levels of evidence.