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Functional Impact of Congenital Hand Differences: Early Results From the Congenital Upper Limb Differences (CoULD)
Donald S Bae1, Maria F Canizares1, Patricia E Miller1
1Department of Orthopaedic Surgery, Children's Hospital Boston, Boston, MA.
Insights
Children with congenital upper limb differences experience reduced function but report positive emotional states and strong peer relationships. This study highlights their unique challenges and resilience before treatment.
Area of Science:
- Pediatric Orthopedics
- Rehabilitation Medicine
- Child Psychology
Background:
- Congenital upper limb differences significantly impact children's lives.
- Understanding pre-treatment functional, emotional, and social status is crucial for effective intervention.
- Existing data on the holistic impact on affected families is limited.
Purpose of the Study:
- To assess the functional, emotional, and social effects of congenital upper limb differences in children and families before treatment.
- To utilize validated instruments for comprehensive outcome measurement.
Main Methods:
- The Congenital Upper Limb Differences registry enrolled 586 children across two pediatric hospitals.
- Data collected included demographics, clinical details, and radiographic information.
- Functional outcomes were evaluated using the Pediatric Outcomes Data Collection Instrument (PODCI) and Patient-Reported Outcomes Measurement Information System (PROMIS) modules in 301 patients.
Main Results:
- Patients reported high PODCI scores but lower PROMIS upper extremity (UE) function scores compared to population norms.
- Despite functional deficits, patients exhibited low pain, anxiety, and depression scores, with higher peer relationship scores.
- Limb involvement extent and co-occurring conditions influenced functional and pain outcomes.
Conclusions:
- Children with congenital hand differences show diminished UE function but enhanced peer relationships and emotional well-being.
- The Congenital Upper Limb Differences registry provides valuable insights for clinical practice and future research.
- Longitudinal data will further elucidate UE function and psychosocial health in pediatric populations.
Purpose:
To characterize the functional, emotional, and social impact of congenital upper limb differences on affected children and families before treatment, using validated functional outcome instruments.
Methods:
From June 2014 to March 2016, 586 children with congenital upper limb differences from 2 pediatric hospitals were enrolled in the Congenital Upper Limb Differences registry. Demographic, clinical, and radiographic data were collected, and diagnoses categorized according to the Oberg-Manske-Tonkin classification. Functional outcomes were assessed in 301 patients using the Pediatric Outcomes Data Collection Instrument (PODCI) and Patient-Reported Outcomes Measurement Information System (PROMIS) upper extremity (UE) function, pain, anxiety, depression, and peer relationships modules.
Results:
The cohort had high median PODCI scores in all domains, ranging from 83 to 100 in children and adolescents. Patients had decreased PROMIS UE scores compared with population norms; however, they showed low scores for pain, anxiety, depression and higher scores in the peer relationship domain, respectively. Patients with entire limb involvement had higher PROMIS pain scores and lower PODCI UE and global functioning than those with differences limited only to the hand. Compared with those with bilateral involvement, patients with unilateral differences reported higher scores for PODCI sports global functioning, better PROMIS UE function, and lower pain scores. Additional orthopedic conditions and medical comorbidities negatively influenced all PODCI scores and PROMIS pain and UE function domains.
Conclusions:
Children with congenital hand differences report decreased upper limb function but better peer relationships and positive emotional states compared with population norms.
Clinical Relevance:
The Congenital Upper Limb Differences registry is a valid source of information related to congenital upper limb differences in clinical practice. With continuous enrollment and longitudinal follow-up, the registry will increase the understanding of UE function and psychosocial aspects of health in pediatric population.
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