Endocrine Abstracts

Hypoparathyroidism, a rare endocrine disorder of insufficient parathyroid hormone, leads to hypocalcemia and often hyperphosphatemia. The PARADOX study assessed the clinical and personal disease impact from the affected patients’ perspective.

Patients ≥18 years and diagnosed ≥6 months ago completed a non-validated, self-reported, web-based survey.

Three hundred and seventy-four US adults (mean age, 49 years; women, 85%; mean disease duration, 13 years; self-reported severe disease, 31%) completed the study. Patients reported visiting a mean of 6 physicians before and after diagnosis; 48% strongly agreed to feeling mismanaged at diagnosis, and 79% strongly agreed that most physicians do not understand hypoparathyroidism. Patients visited their current physician a mean of 4 times/year. The majority strongly agreed that they felt unprepared to manage hypoparathyroidism at diagnosis (56%), that controlling their hypoparathyroidism was harder than expected (60%), and that they were concerned about long-term complications of their medications (75%). Despite current management regimens, 72% experienced >10 symptoms in the preceding 12 months and for a mean of 13 h/day. Symptoms reported by >75% of patients were fatigue (82%), muscle pain/cramping (78%), and paresthesia (76%). 259 patients (69%) experienced comorbidities, most frequently cardiac arrhythmias (66%) and kidney stones (36%). Hospital or ER visits were reported by 79% of patients; the annualized rate exceeded the US average (ER visits, 0.8 vs 0.4; hospital stays, 1.3 vs 0.6). Significant interference with daily life was reported by 45% of patients, an inability to perform some household activities by 85%, and a disease-associated change in employment status by 20%, of whom 44% reported a disabled employment status.

To our knowledge, this is the largest, most comprehensive study conducted to assess the impact of hypoparathyroidism from the patients’ perspective. Despite the current standard of treatment, patients have a high burden of illness and experience various daily symptoms, with multifaceted effects on their lives.