Siggelkow, Heide

[["dc.bibliographiccitation.firstpage","159"],["dc.bibliographiccitation.issue","2"],["dc.bibliographiccitation.journal","Clinical Endocrinology"],["dc.bibliographiccitation.lastpage","168"],["dc.bibliographiccitation.volume","92"],["dc.contributor.author","Siggelkow, Heide"],["dc.contributor.author","Clarke, Bart L."],["dc.contributor.author","Germak, John"],["dc.contributor.author","Marelli, Claudio"],["dc.contributor.author","Chen, Kristina"],["dc.contributor.author","Dahl‐Hansen, Helen"],["dc.contributor.author","Glenister, Elizabeth"],["dc.contributor.author","Bent‐Ennakhil, Nawal"],["dc.contributor.author","Judge, Davneet"],["dc.contributor.author","Mycock, Katie"],["dc.contributor.author","Bollerslev, Jens"],["dc.date.accessioned","2020-01-14T10:41:54Z"],["dc.date.accessioned","2021-10-27T13:22:06Z"],["dc.date.available","2020-01-14T10:41:54Z"],["dc.date.available","2021-10-27T13:22:06Z"],["dc.date.issued","2020"],["dc.description.abstract","OBJECTIVE: To address knowledge gaps regarding burdens associated with not adequately controlled chronic hypoparathyroidism. DESIGN: Global patient and caregiver survey. STUDY POPULATIONS: Patients with chronic hypoparathyroidism not adequately controlled on conventional therapy and their caregivers. MEASUREMENTS: Health-related quality of life (HRQoL) and health status were evaluated using the 36-item Short Form version 2 (SF-36 v2.0) and Five-Level EuroQoL 5 Dimensions (EQ-5D-5L) instruments, respectively. Hypoparathyroidism-associated symptoms were assessed by a disease-specific Hypoparathyroidism Symptom Diary and caregiver burden via the Modified Caregiver Strain Index (MCSI). RESULTS: Data were obtained from 398 patients and 207 caregivers. Patients' self-rated hypoparathyroidism-related 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-day recall period. Impacts (rated 'somewhat' or 'very much') 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-rated overall symptom severity and HRQoL and health status assessment scores-the greater the symptom severity, the lower the SF-36 and EQ-5D-5L scores. Caregiver burden increased with patient self-rated symptom severity: none, 1.7 MCSI; mild, 5.4 MCSI; moderate, 9.5 MCSI; and severe, 12.5 MCSI. CONCLUSION: 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."],["dc.identifier.doi","10.1111/cen.14128"],["dc.identifier.eissn","1365-2265"],["dc.identifier.isbn","31721256"],["dc.identifier.issn","0300-0664"],["dc.identifier.purl","https://resolver.sub.uni-goettingen.de/purl?gs-1/17089"],["dc.identifier.uri","https://resolver.sub.uni-goettingen.de/purl?gro-2/92068"],["dc.language.iso","en"],["dc.notes.intern","Migrated from goescholar"],["dc.relation.eissn","1365-2265"],["dc.relation.issn","1365-2265"],["dc.relation.issn","0300-0664"],["dc.relation.orgunit","Universitätsmedizin Göttingen"],["dc.rights","CC BY-NC 4.0"],["dc.rights.uri","https://creativecommons.org/licenses/by-nc/4.0"],["dc.subject.ddc","610"],["dc.title","Burden of illness in not adequately controlled chronic hypoparathyroidism: Findings from a 13‐country patient and caregiver survey"],["dc.type","journal_article"],["dc.type.internalPublication","yes"],["dc.type.peerReviewed","yes"],["dc.type.version","published_version"],["dspace.entity.type","Publication"]]