Subjective health status, life performance and complications in chronic hypoparathyroidism – a German multicenter survey

Background: There is mounting evidence that conventional replacement strategies with calcium and vitamin D are insufficient to fully prevent complications of chronic hypoparathyroidism (HypoPT) in all patients. Methods: To investigate the disease burden of chronic HypoPT, we performed a survey in 205 HypoPT patients (159 females; median age 55 years; median disease duration 16 years). Patients received a disease-specific questionnaire asking for subjective health status, comorbidities, disease-related emergencies and interference of HypoPT with daily and work life. Patients were further assessed by the SF-36 questionnaire. Data was compared to sex- and age-matched subjects from the Study of Health in Pomerania SHIP-START, the German Health Interview and Examination Survey for Adults (DEGS1) and to 214 patients with adrenal insufficiency. Results: Clinical symptoms associated with HypoPT during the past 12 months were reported by 92% of patients, requiring medical intervention in 32%. Since primary diagnosis of HypoPT, 36% of patients had presented at least once at an emergency department due to severe hypocalcemia (14.7 events per 100 patient years). Trigger factors for hypocalcemic symptoms were reported by 76% of patients (e.g. physical activity, infections, hot weather). In comparison to population-based controls, patients with HypoPT showed a higher prevalence of renal insufficiency (11% vs. 2%, p