SUN-597 Healthcare Utilization Patterns Among Commercially Insured Patients with Prader-Willi Syndrome: A Retrospective Analysis of Administrative Claims

Prader-Willi syndrome (PWS) is a complex orphan endocrine disease characterized by hyperphagia and abnormal food-related behaviors that contribute to severe morbidity and early mortality along with a significant burden on patients and caregivers. Life-long medical care is required but the consistency of services rendered to this population has not been evaluated. This study characterized use of US hospital care, specialty physician care, and growth hormone (GH) therapy for PWS patients at different life stages. Methods: PWS ICD-9 codes in the IQVIA™ Health Plan Claims Data from 1/2006 to 9/2015 were used to identify PWS patients. Inclusion criteria considered patients <65 years of age with ≥12 months of continuous enrollment who received ≥2 PWS diagnostic codes. Observation time was segmented into 12-month patient-years for analysis. Standardized billing code conventions were used to identify and categorize services of interest from 1/2006 to 11/2018. Results: A total of 5,060 PWS patient years representing 1,461 unique patients were eligible. Mean annual visits to inpatient, emergency department, and physician office settings ranged by age-cohort in years from 0.2-1.6, 0.5-1.3, and 9.2-26.0, respectively. Younger (0-17) and older (50-64) age-cohorts utilized more services than early-mid adulthood age-cohorts. Use of pediatricians or endocrinologists ranged from 76% to 88% among patients under 18 years of age. Utilization of cardiologists, orthopedists, physical therapists, and otolaryngologists ranged by age-cohort from 8-44%, 7-21%, 3-21%, and 7-38%, respectively, with highest utilization among younger patients. GH use increased from 37% to 46% of PWS patients between 2007 and 2018. GH users <18 years of age were 3.0, 0.6, 1.9, 1.7, and 1.4 times as likely to utilize endocrinologists, cardiologists, orthopedists, physical therapists, and otolaryngologists, respectively, compared with non-GH users. Conclusions: Use of hospital services for PWS patients was bimodal with higher use among the youngest and oldest age-cohorts. Change in the utilization level of select specialists reflects the complexity of care for age-related clinical sequelae, such as orthopedic concerns in infancy and early-onset cardiovascular disease due to hyperphagia and obesity in adolescents, as well as syndrome-specific treatment protocols (e.g., specialty consults needed for GH treatment). That less than half of PWS patients <18 years of age received GH therapy despite growing clinical evidence on the benefits and tolerability of GH suggests a potential gap in provider knowledge of the standard of care for PWS. Our analysis suggests that GH use may be a surrogate for better access to a multidisciplinary care team and specialty services. Considerable variation of services indicates that more effort is required to optimize care in PWS.