The Effect of Adoption on Functioning and Psychosocial Well-Being in Patients With Congenital Upper-Extremity Differences

CoULD Study Group

Research output: Contribution to journalArticlepeer-review

4 Scopus citations


Purpose: Adoption status has been investigated in numerous populations, identifying negative and positive effects on patient outcomes. This study compared parent-reported outcomes in adopted and nonadopted individuals with congenital upper-extremity (UE) anomalies to determine whether there was a measurable difference in parent perceptions of psychosocial health and functioning. Methods: The Congenital Upper Limb Differences registry identified adopted individuals from a large cohort of patients. Each adopted patient was matched to 2 nonadopted patients by sex, age, and diagnosis of UE difference using the Oberg-Manske-Tonkin classification. Parent-reported scores on functional and psychosocial subjective outcomes were compared between the 2 cohorts using the Pediatric Outcome Data Collection Instrument. Results: Ninety-one adopted pediatric patients with congenital UE differences were identified. Sixty had complete matches for comparison, and the remaining 31 patients were not able to be matched and were excluded from the analysis. Pediatric Outcome Data Collection Instrument scores for the UE function domain were worse in the adopted cohort as judged by minimally clinically important difference. In contrast, scores for Pediatric Outcome Data Collection Instrument domains of transfer and mobility, sports and physical function, pain and comfort, and happiness did not exceed the minimally clinically important difference, although the adopted cohort scores were all relatively lower than the nonadopted cohort scores. Conclusions: In pediatric patients with UE differences, adoption status is seen to affect only the parent-reported domain of UE function. While differences by specific congenital diagnosis call for additional investigation, overall, these findings should be reassuring to families planning to adopt children with UE differences, and they should be supported in their expectations of UE functioning. Type of study/level of evidence: Prognostic III.

Original languageEnglish
Pages (from-to)856-861
Number of pages6
JournalJournal of Hand Surgery
Issue number10
StatePublished - Oct 2021


  • Adoption
  • Pediatric Outcome Data Collection Instrument
  • congenital
  • hand
  • patient-reported outcomes


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