Purpose
Congenital below-elbow amputation (BEA) is a common upper-extremity anomaly and generally
encompasses 2 diagnoses, symbrachydactyly and transverse deficiency. Little is known
about the physical, mental, and social well-being of adults with congenital BEA. A
deeper understanding of longitudinal outcomes within this population may help guide
family conversations and counseling for patients with congenital BEA.
Methods
The Shriners Hospitals for Children Health Outcomes Network was queried to identify
all patients currently >18 years of age who had been seen as a child between 1975
and 2019 for congenital BEA at 1 of 20 Shriners Hospitals across North America. A
unique health survey examining physical functioning, mental health, social outcomes,
and health-related quality of life was constructed and sent by mail or in electronic
form to eligible patients.
Results
A total of 64 questionnaires were completed. Patients ranged between 18 and 34 years
of age, and 70% were female. Nearly two-thirds of patients (64%) reported that a prosthesis
was not required and only 14% reported daily prosthetic use. Although respondents
reported below-average Patient-Reported Outcomes Measurement Information System (PROMIS)
upper-extremity scores, there were no differences in Short-Form 12 or Quick Disabilities
of the Arm, Shoulder, and Hand scores relative to the US general population. Study
participants had lower PROMIS Pain Intensity and higher PROMIS satisfaction with social
roles and activities scores than the US general population, translating to clinically
meaningful differences.
Conclusions
Although adults with congenital BEA report lower upper-extremity functional scores
than the general population, they report no clear differences from normative values
in self-efficacy, psychosocial well-being, health-related quality of life, or global
life satisfaction.
Type of study/level of evidence
Prognostic IV.
Key words
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Article info
Publication history
Published online: August 27, 2022
Accepted:
July 6,
2022
Received:
January 9,
2022
Publication stage
In Press Corrected ProofFootnotes
No benefits in any form have been received or will be received related directly or indirectly to the subject of this article.
Identification
Copyright
© 2022 by the American Society for Surgery of the Hand. All rights reserved.
