Health Related Quality of Life in Children with Fibular Hemimelia

Description

In this presentation, orthopedic fellow Njalalle Baraza discusses a comprehensive five-year study conducted at BCCH, focusing on the quality of life for patients affected by fibula hemimelia, a congenital deficit of the fibula. Highlighting its rarity, with an incidence of one in 50,000 live births, Baraza explains the study's aims to determine if treatment methods enhance life quality. The research involved gathering a database of patients, collecting their PedsQL scores—measures of health-related quality of life—since January 2015.



The findings reveal that the majority of patients categorized as type III according to the Paley classification experience noticeable struggles, evidenced by lower scores from parents of those using external fixators. Graphs illustrate trends indicating that quality of life scores tended to improve post-surgery and correlated positively with the number of surgeries undertaken. Despite some improvements in parental assessments over time, results present complexities with no statistical significance in some areas. The analysis uncovers that as patients with more surgery tended towards better quality-of-life outcomes, it contrasts with initial perceptions of surgery-associated distress, suggesting a gradual emergence of benefits from intensive treatment.



Baraza emphasizes limitations such as the diverse nature of conditions within fibula hemimelia, the influence of peer dynamics on patient scores, and the recognition that medical interventions alone do not entirely account for variability in outcomes. He concludes by encouraging further refinement in data collection and engagement with families to ensure equitable access to care and highlight the importance of patient-reported outcomes in optimizing treatments.

Specialties