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<0.001) and more frequently received antihypertensive (44% vs. 34%; p=0.003) and antiepileptic drugs (5% vs. 2%, p=0.01). Lifetime prevalence of both depression (22% vs. 15%, p=0.003) and anxiety (21% vs. 6%, p<0.001) were increased in HypoPT. SF-36 values indicated significantly reduced subjective health status in HypoPT patients compared to controls as well as patients with adrenal insufficiency. Conclusion Despite established treatment, chronic HypoPT is associated with a variety of symptoms with a significant impact on daily life and work life. Trial registration https://ClinicalTrials.gov/NCT03437174 .