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Comparison of Self-Reports and Parent Proxy-Reports of Function and Quality of Life of Children with Below-the-Elbow Deficiency
Lindsey C. Sheffler, BS1; Cheryl Hanley, OTR/L2; Anita Bagley, PhD2; Fred Molitor, PhD2; Michelle A. James, MD2
1 Department of Orthopaedic Surgery, University of California, Davis, School of Medicine, 4860 Y Street, Sacramento, CA 95817
2 Shriners Hospital for Children Northern California, 2425 Stockton Boulevard, Sacramento, CA 95817. E-mail address for M.A. James: mjames@shrinenet.org
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Disclosure: In support of their research for or preparation of this work, one or more of the authors received, in any one year, outside funding or grants in excess of $10,000 from Shriners Hospitals for Children. Neither they nor a member of their immediate families received payments or other benefits or a commitment or agreement to provide such benefits from a commercial entity.
Investigation performed at Shriners Hospital for Children Northern California, Sacramento, California

The Journal of Bone and Joint Surgery, Inc.
J Bone Joint Surg Am, 2009 Dec 01;91(12):2852-2859. doi: 10.2106/JBJS.H.01108
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Abstract

Background: The agreement between children's self-reports and parent proxy-reports has not been established for function and quality-of-life measures for children with musculoskeletal diagnoses, including unilateral congenital below-the-elbow deficiency. Factors influencing parent-child agreement in this population have yet to be determined.

Methods: Ten hospitals administered the Pediatric Outcomes Data Collection Instrument (PODCI) and the Pediatric Quality of Life Inventory (PedsQL) prospectively to children and adolescents with a unilateral congenital below-the-elbow deficiency in order to assess their function and quality of life. Two-thirds of the subjects wore a prosthesis. These children's and adolescents' self-reports were compared with their parents' proxy-reports for the PODCI (n = 179) and the PedsQL (n = 364).

Results: Parents underestimated their children's/adolescents' self-report scores for the upper extremity physical function domain of the PODCI (p < 0.001) and overestimated the scores for comfort in the pain/comfort domain of the PODCI (p < 0.05). Parents also reported a lower social functioning score on the PedsQL than did the children and adolescents (p < 0.001). Greater agreement with regard to the social functioning domain of the PedsQL was observed between parents and children than between parents and adolescents (p < 0.05) and between parents and subjects who did not wear a prosthesis than between parents and subjects who wore a prosthesis (p < 0.01).

Conclusions: Although the absolute differences are small, children with a unilateral congenital below-the-elbow deficiency report better upper-extremity function and quality of life than their parents perceive, but they may also be experiencing more pain. Factors influencing parent-child agreement on measures of quality of life include age and use of a prosthesis. Parents' reports of function may provide a helpful counterbalance to children's and adolescents' reports, but because quality of life is subjective by nature, the child's or adolescent's report is the gold standard. As a result of variability in agreement, PODCI and PedsQL parent reports cannot be considered true proxies for the self-reports of children or adolescents with unilateral congenital below-the-elbow deficiency or, possibly, of those with other musculoskeletal diagnoses.

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    Accreditation Statement
    These activities have been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint sponsorship of the American Academy of Orthopaedic Surgeons and The Journal of Bone and Joint Surgery, Inc. The American Academy of Orthopaedic Surgeons is accredited by the ACCME to provide continuing medical education for physicians.
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