ECE2020 Audio ePoster Presentations Bone and Calcium (121 abstracts)
Burden of illness in patients with chronic hypoparathyroidism not adequately controlled with conventional therapy: European subanalysis of a global patient survey
Heide Siggelkow 1 , John Germak 2 , Claudio Marelli 3 , Kristina Chen 4 , Helen Dahl-Hansen 5 , Elizabeth Glenister 6 , Nawal Bent-Ennakhil 7 , Davneet Judge 7 , Katie Mycock 7 & Bart L Clarke 8
1University of Göttingen, Clinic of Gastroenterology and Endocrinology, Göttingen, Germany; 2Shire Human Genetic Therapies, Inc., a Takeda company, US Medical Affairs, Massachusetts, United States; 3Shire International GmbH, a Takeda company, Global Medical Affairs, Glattpark-Opfikon (Zurich), Switzerland; 4Shire Human Genetic Therapies, Inc., a Takeda company, Global Outcomes Research Epidemiology Data Sciences Institute, Research and Development, Massachusetts, United States; 5hypoPARA NORGE, Vettre, Norway; 6Parathyroid UK, Yorkshire, United Kingdom; 7Adelphi Real-World, Bollington, United Kingdom; 8Mayo Clinic Rochester, Division of Endocrinology, Diabetes, Metabolism, & Nutrition, Minnesota, United States
Although chronic hypoparathyroidism is known to negatively affect health-related quality of life (HRQoL), burden of illness is less well defined in patients whose disease is not adequately controlled on conventional therapy. We report burden of illness for the European subset of a patient survey in 13 countries globally. 398 adults with chronic hypoparathyroidism not adequately controlled on conventional therapy (recruited by treating physician or patient association) completed the survey online anonymously between October 2017 and March 2018. Health status/HRQoL were evaluated using the 36-item Short Form Health Survey version 2.0 (SF-36 v2.0)/-EuroQoL 5 Dimensions Five-Level (EQ-5D-5L). Employment status/productivity were evaluated using the Work Productivity and Activity Impairment (WPAI) questionnaire. Symptom severity was self-rated as well as assessed using a hypoparathyroidism symptom diary (7-day recall period). This subanalysis includes 203 patients (Denmark; n = 11; France, n = 13; Germany, n = 31; Italy, n = 35; Norway, n = 16; Spain, n = 35; Sweden, n = 17; UK, n = 45). Self-rated symptom severity was mild (25%), moderate (61%), or severe (14%); no one self-reported as symptom-free. Mean SF-36 summary scores (0–100), EQ-5D-5L utility scores (0–1), and EQ-5D-5L visual analogue scale (VAS) scores (0–100) according to self-rated symptom severity are summarised in the Table; health status and HRQoL decreased with increasing self-rated symptom severity. According to the hypoparathyroidism symptom diary tool, moderate/severe/very severe symptoms were reported by 41%/24%/8% of patients for physical fatigue, 43%/12%/2% for muscle cramps, and 48%/13%/1% for heaviness in the limbs; moderate/severe/very severe cognitive symptoms (ie, slow/confused thinking) and mood symptoms of anxiety and sadness/depression were reported by 30%/13%/4%, 31%/14%/1%, and 13%/10%/3% of patients, respectively. Impact on personal relationships, work, sleep, and ability to exercise were reported by 68%, 77%, 83%, and 86% of patients. Mean (SD) percent overall impairment at work score was 51.5% (25.67%) and increased with self-rated symptom severity (Table). These results demonstrate a burden of illness on HRQoL, symptoms, and functioning at work in European patients with not adequately controlled chronic hypoparathyroidism. Degree of burden reflected self-rated symptom severity. These results are consistent with those from the global population.
Funding: Shire, a Takeda company
| Mean (SD) | Mild Symptoms (n = 51) | Moderate Symptoms (n = 121) | Severe Symptoms (n = 28) | Total (n = 203) |
| SF-36 physical | 45.3 (9.28) | 37.7 (8.85) | 28.7 (7.54) | 38.3 (10.09) |
| SF-36 mental | 44.2 (10.15) | 35.1 (8.68) | 30.1 (10.75) | 36.6 (10.41) |
| EQ-5D-5L utility | 0.9 (0.10) | 0.7 (0.20) | 0.4 (0.27) | 0.7 (0.24) |
| EQ-5D-5L VAS | 71.4 (17.76) | 56.5 (16.69) | 39.6 (16.5) | 56.4 (19.33) |
| WPAI impairment due to problem, % | 30.8 (23.72) | 54.0 (21.71) | 76.6 (16.1) | 51.5 (25.67) |
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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