Patient-Reported Outcomes after Syndactyly Reconstruction

Abstract

There is no financial information to disclose. We hypothesize that, despite undergoing reconstruction, children with congenital syndactyly will have lower patient-reported function and quality of life than unaffected children. All patients undergoing congenital syndactyly reconstruction at the Ann & Robert H. Lurie Children’s Hospital of Chicago between January 2007 and January 2016 were identified. The Pediatric Outcomes Data Collection Instrument (PODCI) and Patient-Reported Outcomes Measurement Information System (PROMIS) questionnaire were completed by patients; parent-proxy questionnaires were completed for patients 10 years of age and younger and those unable to complete the questionnaire independently. PODCI assessed upper extremity function, transfers and basic mobility, sports and physical functioning, comfort/pain, happiness, and global functioning. PROMIS assessed upper extremity function, peer relations, pain interference, and depressive symptoms. We also performed a retrospective chart review to capture relevant demographic and clinical information. One-hundred twenty-four patients met inclusion criteria; 51 completed both the PODCI and PROMIS surveys (response rate, 41.1%). Average PODCI and PROMIS scores for upper extremity function were 42.5 19.96 and 41.8 11.8, respectively (Table 39-1). For patients with a documented history of developmental delay, PODCI and PROMIS scores for upper extremity function were 23.8 ± 6.2 and 18.2 ± 30.7, respectively. PROMIS scores for pain interference were higher for the parent-proxy group compared to the self-report group (parent-proxy: 47.7 ± 9.7, self-report: 38.3 ± 7.3, P = 0.0052). PODCI scores for comfort (absence of pain) were lower for the parent-proxy group compared to the self-report group (parent-proxy: 51.3 ± 9.6, self-report: 55.5 ± 3.4, P = 0.028) (Fig. 39-1). •Patients who have undergone reconstruction for congenital syndactyly report impairments in upper extremity function, but other components of health-related quality of life are comparable to the general population.•Developmental delay was associated with additional impairments in upper extremity function.•Parents of children who have undergone reconstruction for syndactyly overestimate the amount of pain their children experience.Table 39-1Mean PROMIS and PODCI Scores for All Patients Who Completed SurveysScorePROMISUpper Extremity41.8 ± 11.8FunctionPeer Relations51.5 ± 9.5Pain Interference46.0 ± 9.9Depressive Symptoms44.0 ± 8.1PODCIUpper Extremity42.5 ± 20.0FunctionTransfers and Basic Mobility48.3 ± 21.2Sports and Physical Functioning47.8 ± 15.2Pain/Comfort52.0 ± 8.9Happiness52.3 ± 7.7Global Functioning47.5 ± 18.5Scores are presented as mean ± SD. Open table in a new tab Scores are presented as mean ± SD.