Characteristics, conditions, and healthcare service utilization patterns of individuals diagnosed with Rett Syndrome: an analysis of administrative claims data

Aim: To date, no studies have used a commercially available claims dataset to examine the characteristics, conditions, and healthcare service utilization of individuals with Rett syndrome. Objective: To improve understanding of the Rett population using data available to health insurance plans. Methods: Data were integrated medical and pharmacy claims from the Real-World Evidence data repository licensed from the Decision Resources Group. Individuals had claims for >2 visits which included a diagnosis of Rett and were stratified into three age groups: 1 (<5 years), 2 (>5 and <10 years) and 3 (>10 years). Co-occurring conditions and healthcare service utilization were measured. Diagnoses prior to Rett were evaluated. Results: Most were female. Epilepsy, incontinence, and scoliosis were common co-occurring conditions. Individuals averaged 4.6 office and 2.5 outpatient visits, and 2.1 emergency and 2.9 inpatient admissions. Group 1 used more physical, occupational and speech therapy and averaged more inpatient days compared with others (p < 0.05). Conclusion: This study improves understanding of Rett using data that is typically available to health insurance companies.