Endocrine Abstracts

Significant knowledge gaps exist regarding the humanistic effects of hypoparathyroidism, a rare, debilitating disorder. We report results from a global survey to characterise the burden of hypoparathyroidism from the patient perspective. An anonymous survey was conducted in patients with uncontrolled chronic hypoparathyroidism (as determined by patients’ report of persistent symptoms and/or poorly controlled calcium levels as told by their physician) despite receiving conventional therapy. Patients currently or previously treated with parathyroid hormone were excluded. Health-related quality of life (HRQoL) and health status were evaluated using 2 validated instruments, SF-36 and EQ-5D-5L. Hypoparathyroidism-associated symptoms were assessed through the disease-specific Hypoparathyroidism Symptom Diary (7 days recall). Levels of work productivity and impairment were evaluated using the WPAI tool. All analyses were descriptive. The survey was conducted October 2017–March 2018 in 398 patients. Patients were asked to rate their self-perceived overall symptom severity level given the scale of no symptoms (3%), mild (32%), moderate (53%), or severe (12%). Mean SF-36 summary scores (0–100) were 45.4/44.6/37.1/28.7 (physical component summary) and 53.2/44.9/35.2/31.6 (mental health component summary) for patients reporting no/mild/moderate/severe hypoparathyroidism symptoms, respectively. Mean EQ-5D-5L utility scores (0–1) were 0.9/0.8/0.7/0.4 and EQ-5D-5L visual analogue scale scores (0–100) were 86.9/72.5/57.7/41.1 for patients reporting no/mild/moderate/severe hypoparathyroidism symptoms, respectively. Per the Hypoparathyroidism Symptom Diary, patients reported moderate/severe/very severe physical symptoms of physical fatigue (39%/25%/9%), muscle cramps (38%/12%/4%), and heaviness in limbs (37%/14%/4%). Moderate/severe/very severe cognitive symptoms (slow/confused thinking) were reported by 28%/13%/6% of patients. Moderate/severe/very severe mood symptoms of anxiety and sadness/depression were reported by 29%/14%/3% and 28%/10%/4% of patients, respectively. The percentages of patients reporting an impact on family relationships, work, sleep, and ability to exercise were 63%, 75%, 78%, and 84%, respectively. 50% of patients were currently employed. WPAI scores showed patients working at 59% of their full capacity. Overall work impairment increased with self-perceived symptom severity: 18%/28%/49%/68% for patients reporting no/mild/moderate/severe hypoparathyroidism symptoms, respectively. Change of employment resulting from hypoparathyroidism was reported by 0%/29%/67%/83% of patients reporting no/mild/moderate/severe symptoms, respectively. The percentages of patients reporting ‘a major impact’ on relationships also rose with symptom severity: spouse/partner (0%/14%/33%/55%), family (0%/13%/34%/61%), and friends (0%/16%/45%/65%), for patients reporting no/mild/moderate/severe symptoms, respectively. Findings from this global survey demonstrated substantial burdens associated with uncontrolled chronic hypoparathyroidism with respect to HRQoL, disease-related symptoms, employment status, productivity, and relationships. The degree of burden corresponds with the severity of hypoparathyroidism-related symptoms reported by patients.