Eligibility criteria identified 1,046 individuals diagnosed with Rett and 2,157 in the control cohort. All-cause healthcare visits totaled 24.7 vs. 8.3 PPPY (p<0.05) among the Rett and control cohorts, respectively. The Rett cohort averaged 3-fold more PCP visits (15.0 vs. 4.9, p<0.05). Similar differences were observed for non-PCP outpatient visits (Rett: 6.3 vs. control: 2.2, p<0.05). Inpatient admissions were 7.3-fold higher among the Rett compared with the control cohort (2.2 vs. 0.3, p<0.05). ED visits were also higher (1.2 vs. 0.9, p<0.05). Other medical services used, which included medical equipment, labs etc., were 20-fold higher among the Rett cohort (42.1 vs. 2.1, p<0.05).
Healthcare utilization patterns translated into higher medical costs for the Rett cohort vs. controls. Total medical costs were 20-fold higher among the Rett cohort PPPY ($25,926.30 vs. $1,611.00, p<0.05). Cost differences between cohorts were driven by other medical services used ($19,384.20 vs $437.80, p<0.05) although all cost categories were higher and statistically different for the Rett and control cohort.