Purpose
Patient beliefs about health and disability are shaped by many social factors and
are a key determinant in their ultimate outcome. We hypothesized that pediatric and
parent-reported outcome measures regarding a child’s congenital upper limb difference
will be affected by geographic location, parent education, sex, ethnicity, race, age,
and presence of additional medical comorbidities.
Methods
Patients enrolled in the multicenter Congenital Upper Limb Difference registry were
included. Age, sex, race, ethnicity, medical comorbidities, highest level of parental
education, area deprivation index, and geographic region were recorded. Patient-Reported
Outcomes Measurement Information System (PROMIS) in the pediatric and parent-reported
domains of upper extremity, anxiety, pain interference, peer relationships, and depressive
symptoms were collected.
Results
The only difference between geographic regions in the United States in pediatric and
parent-reported PROMIS was that parents in the Midwest reported higher upper extremity
function scores in children with upper limb differences than the West. Black patients
demonstrated higher scores in parent and child-reported domains of depression, pain,
and anxiety, and lower scores in upper extremity function than White and Asian peers.
Additionally, children with medical comorbidities also demonstrated worse outcomes
in multiple PROMIS domains. There was no difference in scores based on sex, parent
education, and ethnicity.
Conclusions
In children with congenital upper limb differences, race and additional medical comorbidities
have an impact on patient- and parent-reported PROMIS outcome measures in multiple
domains, with Black children and those with additional medical comorbidities scoring
lower than their peers.
Clinical relevance
As we strive to develop a health care system that provides equitable care to all patients,
providers who care for children with upper limb differences should be aware that race
and additional medical comorbidities can negatively affect patient- and parent-reported
PROMIS outcome measures.
Key words
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References
- Public policy frameworks for improving population health.Ann N Y Acad Sci. 1999; 896: 281-293
- Making neighborhood-disadvantage metrics accessible–the neighborhood atlas.N Engl J Med. 2018; 378: 2456-2458
- The impact of social deprivation on pediatric PROMIS health scores after upper extremity fracture.J Hand Surg Am. 2018; 43: 897-902
- Social deprivation and congenital upper extremity differences–an assessment using PROMIS.J Hand Surg Am. 2021; 46: 114-118
- Divided we stand: three pyschological regions of the United States and their political, economic, social, and health correlates.J Pers Soc Psychol. 2013; 105: 996-1012
- Functional impact of congenital hand differences: early results from the congenital upper limb differences (CoULD) registry.J Hand Surg Am. 2018; 43: 321-330
- Convergent validity of PODCI and PROMIS domains in congenital upper limb anomalies.J Hand Surg Am. 2020; 45: 33-40
- Patient-reported outcomes in arthrogryposis.J Pediatr Orthop. 2020; 40: 357-360
University of Wisconsin School of Medicine & Public Health: Area Deprivation Index. 2018.
- Patient-reported outcomes measurement information system (PROMIS): efficient, standardized tools to measure self-reported health and quality of life.Nurs Outlook. 2014; 62: 339-345
- The patient-reported outcomes measurement information system (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008.J Clin Epidemiol. 2010; 63: 1179-1194
- Establishing age-calibrated normative PROMIS scores for hand and upper extremity clinic.Plast Reconstr Surg Glob Open. 2021; 9e3768
- Correlation of PROMIS physical function, pain interference, and depression in pediatric and adolescent patients in the ambulatory sports medicine clinic.Orthop J Sports Med. 2019; 72325967119851100
- Race, ethnicity, and socioeconomic status in research on child health.Pediatrics. 2015; 135: 225-237
- Effects of age, sex, and comorbidities on the pediatric outcomes data collection instrument (PODCI) in the general population.J Pediatr Orthop. 2015; 35: 203-209
Article info
Publication history
Published online: January 06, 2023
Accepted:
October 26,
2022
Received:
February 3,
2022
Footnotes
Dr Carlin received financial support from Academic Enrichment Fund at Seattle Children’s Hospital. Dr Steinman received financial support from Seattle Children’s Hospital Faculty Research Support Fund. No benefits in any form have been received or will be received by the other authors related directly or indirectly to the subject of this article.
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© 2023 by the American Society for Surgery of the Hand.
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