Impairments in quality of life and predictors of symptom burden in patients with hypoparathyroidism: results from a population-based survey

PURPOSE: To investigate the quality of life (QoL) in patients with hypoparathyroidism (hypoPT) compared to the general population and to identify sociodemographic and clinical factors that are associated with symptom burden. METHODS: Patients with a diagnosis of hypoPT participated in an online survey. Information regarding the survey was distributed by treating physicians or a self-help organization. Quality of life was assessed using the EORTC QLQ-C30 and symptom burden using the Hypoparathyroid Patient Questionnaire (HPQ28). Multivariate linear regression analysis was used to compare QoL of hypoPT patients with the general population (adjusted for age, sex, education)and to identify factors associated with symptom burden. RESULTS: Altogether, 264 hypoPT patients provided information on QoL and symptom burden. HypoPT was associated with worse cognitive (β = −15.9; p < 0.01) and emotional functioning (β = −12.3; p = 0.04) compared to the general population. The highest symptom burden in hypoPT patients was observed for the domains loss of vitality (mean: 61.4; SD: 21.9), pain and cramps (mean: 43.7; SD: 26.5), and numbness and tingling sensations (mean: 38.9; SD: 30.0). Female gender was associated with a higher symptom burden across all nine domains of the HPQ28, while longer disease duration was associated with a lower symptom burden in neurovegetative symptoms, loss of vitality, depression and anxiety, and depressive symptoms. CONCLUSION: HypoPT patients have impaired QoL compared to the general population. Being female is strongly associated with high symptom burden.