"I have no idea why I am here": A mixed methods analysis to characterize barriers to referral and surgical treatment in disadvantaged patients with primary hyperparathyroidism.

Abstract

Primary hyperparathyroidism is underdiagnosed and undertreated in disadvantaged populations. We aimed to (1) quantify rates of referral and treatment of hyperparathyroidism for patients living in socioeconomically disadvantaged versus advantaged neighborhoods and (2) identify barriers to diagnosis and treatment. We performed a convergent mixed methods analysis of adults (age ≥18 years) without a history of end-stage renal disease, kidney transplant, or prior diagnosis of hyperparathyroidism who had ≥2 episodes of hypercalcemia (calcium >10.2 mg/dL) between 2021 and 2022. We used the Area Deprivation Index to classify patients as advantaged, neutral, and disadvantaged. We compared rates of parathyroid hormone evaluation, consultation with a specialist, and parathyroidectomy within 2 years across Area Deprivation Index levels. We evaluated charts of 40 patients from disadvantaged neighborhoods to identify reasons for nonreferral or lack of surgery. We identified 1,524 patients with repeated hypercalcemia. Parathyroid hormone evaluation rates were similar for advantaged (60.9%) and disadvantaged (58.6%) patients (P = .11). Advantaged patients were significantly more likely than disadvantaged patients to be referred to a specialist (72.7% vs 53.1%, P = .02) or undergo parathyroidectomy (47.1% vs 30.6%, P = .03). The most common barrier was patient preference to avoid surgery, followed by providers not understanding indications for intervention and social determinant-related barriers. Referral rates for primary hyperparathyroidism are particularly low for patients in disadvantaged neighborhoods. Addressing this disparity will require a multicomponent intervention of education for providers on indications for referral, patient-directed efforts to communicate the safety and efficacy of surgery, and support to navigate social barriers to specialist care.