Methods for assessment of health outcomes in children with burn injury: the Multi-Center Benchmarking Study.

The Multi-Center Benchmarking Study (MCBS) is an innovative program giving a new paradigm for monitoring health outcomes in children and adolescents with burn injuries. This article presents the methodologies for conducting a multicenter long-term cohort study of 1,140 children and adolescents with small to large burn injuries followed from the acute burn discharge at four burn centers for up to 4 years. The components for this project include a broad and rich range of patient-centered health assessments tailored to children with burn injury, an infrastructure for obtaining relevant clinical data, and patient-centered questionnaire data based on validated Shriners Hospitals for Children/American Burn Association Burn Outcomes Questionnaire (BOQ) and Short-Form Psychosocial Questionnaire, aged 0 years to 18 years. Recovery curves are described for analysis of complex data with repeated measures that are based on mixed models and generalized estimating equations, with adjustments for clinical characteristics. Accrual rates are as high as 93%, and follow-up rates of completion are 65%. Recovery curves for selected BOQ domains (upper extremity function, patient compliance, and parental concern) are presented for those children and adolescents aged 5 years to 18 years using the rich cohort of data from the MCBS. Results suggest that the BOQ is sensitive and responsive to capturing differences in the rate and levels of change over time. The methods implemented in the MCBS are a useful model for conducting large multicenter studies to track the clinical and quality of life of children with burn injuries.