Elevated Healthcare Resources Utilization and Costs among Individuals Diagnosed with Rett syndrome
Tigwa Davis 1, Purva Parab1, Damian May2, Charles Ruetsch1
1Health Analytics LLC, 2ACADIA Pharmaceuticals
Objective:
Compare the HCRU and medical costs of children with and without Rett syndrome.
Background:
No studies have examined the healthcare resource utilization (HCRU) and costs of individuals diagnosed with Rett syndrome using a commercially available dataset.
Design/Methods:
A retrospective cohort study examined individuals diagnosed with Rett compared to a control sample on HCRU and costs during the 12-months following index. Study data (2017-2022) were integrated medical claims from Clarivate. Index was defined as the initial Rett Dx, or medical claim on record during the case-finding period among individuals in the Rett and control cohorts, respectively. Outcomes were HCRU and cost (per patient per year, PPPY).
Results:
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.
Conclusions:
HCRU and costs among individuals diagnosed with Rett are substantially higher relative to other children in the US and may result in considerable financial burden for parents and caregivers.