Purpose
This study evaluates the perceived functional and psychosocial impact of upper limb
congenital anomalies prior to surgical intervention, utilizing the Pediatric Outcomes
Data Collection Instrument (PODCI) and Patient-Reported Outcomes Measure Information
System (PROMIS) domains. We hypothesized that scores will be in the normal range and
that the 2 outcomes measures will have strong convergent validity.
Methods
A multicenter prospectively collected database of congenital upper limb patients,
the CoULD (Congenital Upper Limb Differences) study group, was utilized. Demographic
information was collected, and anomalies were classified by the Oberg-Manske-Tonkin
(OMT) classification. Scores for PODCI subscales of Upper Extremity (UE) function,
Pain/comfort, and Happiness and PROMIS domain of UE function, Pain, Depression, Anxiety,
and Peer relations were collected. Ceiling and floor effects and convergent validity
for PODCI and PROMIS domains were calculated.
Results
Three hundred fifty-nine patients, average age 10 years and 55% male, were included.
Two hundred forty-one patients had a malformation of the entire limb and 231 had a
hand plate malformation. Four patients had a deformation, 118 dysplasia, and 45 a
syndrome. There was no difference between the PODCI and the PROMIS ceiling or floor
effects for the UE domains. The ceiling effect for PROMIS Pain domain (46%) was similar
to the floor effect of the PODCI Pain subscale and no difference was seen between
the floor effect of PODCI Happiness and PROMIS Depression domains. Convergent validity
was obtained for the UE and Pain domains, and also between PODCI Happiness and PROMIS
Depression subscales.
Conclusions
The PROMIS domains for UE function, Pain, and Depression are comparable with PODCI
scores in congenital upper extremity anomalies.
Clinical relevance
Given the large burden placed on patients with the lengthy PODCI questionnaire, consideration
of replacing the PODCI with the more quickly obtained PROMIS scores may reduce patient
burden and provide similar information in this population.
Key words
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Article info
Publication history
Published online: September 19, 2019
Accepted:
August 6,
2019
Received:
January 7,
2019
Footnotes
No benefits in any form have been received or will be received related directly or indirectly to the subject of this article.
Identification
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© 2020 by the American Society for Surgery of the Hand. All rights reserved.
