Authors:	Büttner, Matthias Krogh, Dieter Führer, Dagmar Fuß, Carmina Teresa Willenberg, Holger Sven Luster, Markus Singer, Susanne Siggelkow, Heide
Title:	Hypoparathyroidism: management, information needs, and impact on daily living from the patients’ perspective : results from a population-based survey
Online publication date:	28-Aug-2023
Year of first publication:	2023
Language:	english
Abstract:	Purpose Hypoparathyriodism (hypoPT) is a rare endocrine disorder. It is not known how hypoPT is managed in Germany or whether patients have unmet information needs or impairments in their daily living. Methods HypoPT patients at a minimum of 6 months’ post-diagnosis were invited to participate in an online survey through their treating physician or through patient organizations. An extensive questionnaire, which was developed and pilot-tested with hypoPT patients, was administered. Results A total of 264 patients with a mean age of 54.5 years (SD: 13.3), 85.2% female and 92% with postsurgical hypoPT, participated in the study. In total, 74% of the patients reported regular monitoring of serum calcium at least every 6 months, with lower control frequencies for phosphate (47%), magnesium (36%), creatinine (54%), and parathyroid hormone (50%), and 24-h urine calcium excretion (36%) on a yearly basis. Information on symptoms of hypo- and hypercalcemia was available in 72 and 45% of the patients. Information needs were related to the disease and its treatment as well as to nutrition, physical activities/sports, and support opportunities. Statistically significant differences for all information needs in association with symptom burden were observed. Hospitalization for hypocalcemia was reported by 32%, nutritional impairments (38%) or impact on work ability (52%) was available among patients with hypoPT. Conclusion HypoPT patients experience impairments in daily living and report unmet information needs. Patient and physician education regarding hypoPT is one of the key concepts for improving the management of patients with hypoPT.
DDC:	610 Medizin 610 Medical sciences
Institution:	Johannes Gutenberg-Universität Mainz
Department:	FB 04 Medizin
Place:	Mainz
ROR:	https://ror.org/023b0x485
DOI:	http://doi.org/10.25358/openscience-9446
Version:	Published version
Publication type:	Zeitschriftenaufsatz
License:	CC BY
Information on rights of use:	https://creativecommons.org/licenses/by/4.0/
Journal:	Hormones 22
Pages or article number:	467 476
Publisher:	Springer International Publishing
Publisher place:	Cham
Issue date:	2023
ISSN:	2520-8721
Publisher DOI:	10.1007/s42000-023-00459-1
Appears in collections:	DFG-491381577-H