MON-519 Impact of Chronic Hypoparathyroidism on Work, Productivity, and Relationships: Findings from a 13-Country Patient and Caregiver Survey

Abstract

Hypoparathyroidism (HypoPT) is associated with significant symptom burden. We present results from a global survey (13 countries) to characterize HypoPT burden from the patient and caregiver perspectives. An anonymous survey was conducted in patients with uncontrolled chronic HypoPT (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. Levels of employment were evaluated using the Work Productivity and Activity Impairment (WPAI) tool. Caregiver burden was evaluated using the Modified Caregiver Strain Index (MCSI). All analyses were descriptive. Survey was conducted Oct 2017─Mar 2018 in 398 patients who met study inclusion criteria (mean age, 51.7 yrs; women, 78%; surgery as main cause of HypoPT, 80%; mean HypoPT duration, 8.9 yrs) and 207 caregivers (mean age, 52.4 yrs; women, 50%; spouse/partner, 70%; mean time providing care, 5.7 yrs; mean hrs/wk providing care, 24.1). 58% of patients had full-time work before HypoPT diagnosis vs 34% at time of survey. Change of employment as a result of HypoPT was associated with an increase in symptom severity (83%, severe; 67%, moderate; 29%, mild). WPAI scores showed patients working and performing activities at 59% and 58% of their total capacity, respectively. Proportion of patients reporting “a major impact” on relationships increased with symptom severity: spouse/partner (55%, severe; 33%, moderate; 14%, mild), family (61%, severe; 34% moderate; 13% mild), and friends (65%, severe; 45%, moderate; 16%, mild). 51% of caregivers had full-time work before caring for their patient with HypoPT vs 41% at time of survey; 26% of 42 caregivers who changed employment attributed it to HypoPT. WPAI scores showed caregivers working and performing activities at 79% and 67% of their total capacity, respectively. Caregivers reported “a major impact” on their relationship with spouse/partner (28%), family (21%), and friends (21%). Increased caregiver burden was associated with patient symptom severity: severe, 12.5 MSCI; moderate, 9.5 MSCI; mild, 5.4 MSCI. Findings from this global survey demonstrated that HypoPT negatively impacts the ability of patients and caregivers to maintain productive employment and personal relationships; degree of burden increased with symptom severity. These results provide unique insight on the burden associated with chronic HypoPT from both the patient and caregiver perspective. Funding: Shire