The Journal of Bone and Joint Surgery (American). 2009;91:2852-2859.
doi:10.2106/JBJS.H.01108
© 2009 The Journal of Bone and Joint Surgery, Inc.
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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 and 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{at}shrinenet.org

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

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.

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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