{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,11]],"date-time":"2026-09-11T03:35:11Z","timestamp":1789097711501,"version":"build-2803163510"},"reference-count":37,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2019,12,11]],"date-time":"2019-12-11T00:00:00Z","timestamp":1576022400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Clinical Endocrinology"],"published-print":{"date-parts":[[2020,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>To address knowledge gaps regarding burdens associated with not adequately controlled chronic hypoparathyroidism.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>Global patient and caregiver survey.<\/jats:p><\/jats:sec><jats:sec><jats:title>Study Populations<\/jats:title><jats:p>Patients with chronic hypoparathyroidism not adequately controlled on conventional therapy and their caregivers.<\/jats:p><\/jats:sec><jats:sec><jats:title>Measurements<\/jats:title><jats:p>Health\u2010related quality of life (HRQoL) and health status were evaluated using the 36\u2010item Short Form version 2 (SF\u201036 v2.0) and Five\u2010Level EuroQoL 5 Dimensions (EQ\u20105D\u20105L) instruments, respectively. Hypoparathyroidism\u2010associated symptoms were assessed by a disease\u2010specific Hypoparathyroidism Symptom Diary and caregiver burden via the Modified Caregiver Strain Index (MCSI).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Data were obtained from 398 patients and 207 caregivers. Patients' self\u2010rated hypoparathyroidism\u2010related symptom severity was none (3%), mild (32%), moderate (53%) or severe (12%). Per the Hypoparathyroidism Symptom Diary, patients reported moderate, severe or very severe symptoms of physical fatigue (73%), muscle cramps (55%), heaviness in limbs (55%) and tingling (51%) over a 7\u2010day recall period. Impacts (rated \u2018somewhat\u2019 or \u2018very much\u2019) were reported by 84% of patients for ability to exercise, 78% for sleep, 75% for ability to work and 63% for family relationships. Inverse relationships were observed between patient self\u2010rated overall symptom severity and HRQoL and health status assessment scores\u2014the greater the symptom severity, the lower the SF\u201036 and EQ\u20105D\u20105L scores. Caregiver burden increased with patient self\u2010rated symptom severity: none, 1.7 MCSI; mild, 5.4 MCSI; moderate, 9.5 MCSI; and severe, 12.5 MCSI.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Patients with not adequately controlled hypoparathyroidism reported substantial symptoms and impacts. Greater patient symptom severity was associated with decreased patient HRQoL and health status assessments and increased caregiver burden.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cen.14128","type":"journal-article","created":{"date-parts":[[2019,11,13]],"date-time":"2019-11-13T03:44:14Z","timestamp":1573616654000},"page":"159-168","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":49,"title":["Burden of illness in not adequately controlled chronic hypoparathyroidism: Findings from a 13\u2010country patient and caregiver survey"],"prefix":"10.1111","volume":"92","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8366-8625","authenticated-orcid":false,"given":"Heide","family":"Siggelkow","sequence":"first","affiliation":[{"name":"Clinic of Gastroenterology and Endocrinology University of G\u00f6ttingen G\u00f6ttingen Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bart L.","family":"Clarke","sequence":"additional","affiliation":[{"name":"Mayo Clinic Division of Endocrinology, Diabetes, Metabolism, and Nutrition Rochester MN USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"Germak","sequence":"additional","affiliation":[{"name":"Shire International GmbH, a member of the Takeda group of companies Zug Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudio","family":"Marelli","sequence":"additional","affiliation":[{"name":"Shire International GmbH, a member of the Takeda group of companies Zug Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3428-9570","authenticated-orcid":false,"given":"Kristina","family":"Chen","sequence":"additional","affiliation":[{"name":"Shire Human Genetic Therapies, Inc., a member of the Takeda group of companies Cambridge MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Helen","family":"Dahl\u2010Hansen","sequence":"additional","affiliation":[{"name":"hypoPARA NORGE Vettre Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth","family":"Glenister","sequence":"additional","affiliation":[{"name":"Hypopara UK East Grinstead UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nawal","family":"Bent\u2010Ennakhil","sequence":"additional","affiliation":[{"name":"Adelphi Real\u2010World Adelphi Mill Bollington UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Davneet","family":"Judge","sequence":"additional","affiliation":[{"name":"Adelphi Real\u2010World Adelphi Mill Bollington UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katie","family":"Mycock","sequence":"additional","affiliation":[{"name":"Adelphi Real\u2010World Adelphi Mill Bollington UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jens","family":"Bollerslev","sequence":"additional","affiliation":[{"name":"Section of Specialized Endocrinology Oslo University Hospital Oslo Norway"},{"name":"Faculty of Medicine University of Oslo Oslo Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2019,12,11]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1530\/EJE-15-0628"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1210\/jc.2015-3907"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1210\/jc.2015-3909"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1530\/EJE-18-0580"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.4158\/EP13328.OR"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1210\/jc.2015-3910"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1055\/a-0902-8476"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/cen.13955"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1530\/eje.0.1460215"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00198-014-2677-6"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1210\/jc.2016-1477"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1111\/cen.13593"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.4158\/EP13321.OR"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.2147\/PROM.S179310"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.cct.2009.02.005"},{"key":"e_1_2_9_17_1","unstructured":"vanReenenM JanssenB.B. 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