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Abstract
Disclosure: P.N. Surampudi: Research Investigator; Self; Spruce Biosciences. A.H. Hamrahian: Consulting Fee; Self; Spruce Biosciences. Research Investigator; Self; Spruce Biosciences. R. Charlton: Employee; Self; Spruce Biosciences. P. Ramtin: Employee; Self; Spruce Biosciences. M.E. Geffner: Consulting Fee; Self; Spruce Biosciences, Ferring Pharmaceuticals, Adrenas, Neurocrine Biosciences, Novo Nordisk, Eton, Pfizer, Inc., Nutritional Growth Solutions, Nutritional Growth Solutions. Research Investigator; Self; Novo Nordisk.
Background: Relative to the general population, patients with classic congenital adrenal hyperplasia (CAH) have increased risks for morbidity and mortality which require specialized management across life stages[1]. Endocrine care, particularly as part of multi-disciplinary teams, can help mitigate risks of developing adrenal crises as well as the impact of glucocorticoid under- or overexposure, including adrenal insufficiency; cardiometabolic risk associated with insulin resistance and excess weight gain; fertility issues associated with irregular menses and gonadal adrenal rest tumors; diminished quality of life; increased mental health issues, including anxiety, depression, and sleep disturbance; and increased fracture risk associated with decreased bone mineral density. Study Objectives and Design: We hypothesized that the utilization of endocrine and multi-disciplinary care by patients with CAH in the United States (U.S.) could be adversely affected by non-therapeutic factors related to geographic location and access to health care. In this cross-sectional study, we utilized the Definitive Healthcare database (Nov. 2020-Nov. 2022) to gain insight into these factors in adults with CAH. Study Findings: Analysis of healthcare provider utilization revealed that only ∼30% of U.S. adults with CAH received care from endocrinologists. The rest utilized primary-care providers (PCPs: IM, FP, NP, PA, and Ob-Gyn) to obtain care. A review of insurance coverage of U.S. adults with CAH suggests that ∼70% had access to commercial insurance and over 50% resided in states with the largest populations (California, Texas, New York, Florida, Ohio, Michigan, and Illinois), both factors which should ordinarily increase accessibility of subspecialty endocrine and multi-disciplinary care. Conclusions: In our study, only 30% of U.S. CAH adults received care from an endocrinologist. Limited utilization of specialty care does not appear to be due to either diverse geographical distribution or access to healthcare. The gap in expert care may adversely affect the management of CAH and contribute to associated comorbidities. Increased partnership between PCPs and endocrinologists, and increased awareness and education regarding specialty care among patients with CAH are needed to improve health outcomes and thereby reduce the risk of morbidity and mortality in adults with CAH. References [1] Falhammar H, Frisén L, Norrby C, Hirschberg AL, Almqvist C, Nordenskjöld A, Nordenström A. Increased mortality in patients with congenital adrenal hyperplasia due to 21-hydroxylase deficiency. J Clin Endocrinol Metab 2014;99:E2715-21.
Presentation: 6/1/2024
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Details
1 UC Davis Medical Center , Davis, CA , USA
2 Johns Hopkins University , Ellicott City, MD , USA
3 Spruce Biosciences , South San Francisco, CA , USA
4 Children's Hospital of Los Angeles , Encino, CA , USA