MON-LB092 Understanding the Patient-Centered Impact of Hypoparathyroidism on Functioning and Well-Being

Abstract

Objectives: Hypoparathyroidism (HP) is a rare endocrine disorder characterized by absent or inappropriately low levels of circulating parathyroid hormone (PTH). Patients with HP on standard of care therapy report debilitating physical and cognitive symptoms which may be indicative of a reduced quality of life (QOL). However, a paucity of data exists on the symptoms and burden of illness experienced by patients with this condition. This study investigated the symptoms experienced by adult patients with HP, and the impacts of HP on patient QOL. Methods: Using a patient-centered, qualitative study design, semi-structured individual interviews were conducted by telephone with 42 adult patients with idiopathic or post-surgical HP. Transcripts were coded using qualitative analysis software and analyzed for content by theme using an adapted grounded theory approach common to qualitative research. An Independent Review Board approved the study. Results: To manage their HP, most study participants took vitamin D (n=41, 98%) or calcium supplements (n=40, 95%); over half took magnesium supplements (n=24, 57%) or PTH therapy (n=22, 52%). Qualitative analyses identified two symptom and four QOL domains for patients with HP: 1) physical signs and symptoms (n=42, 100%), including paresthesia (n=37, 88%), muscle cramping (n=36, 88%), and physical fatigue (n=35, 83%); 2) cognitive signs and symptoms (n=36, 86%), including brain fog (n=32, 76%), impaired memory (n=24, 57%), and impaired conversational ability (n=21, 50%); 3) physical functioning impacts (n=40, 95%), including impaired ability to exercise (n=32, 76%), impaired mobility (n=21, 50%), and being less physically active (n=17,40%); daily life impacts (n=42, 100%), including ability to do things around the home (n=33, 79%), being unable to do as much as one used to or wants to (n=32, 76%), interference with travel (n=27, 64%), and interference with work productivity (n=14, 33%); 5) psychological impacts (n=42, 100%), including feeling anxious (n=34, 81%), frustrated (N=27, 64%), and depressed/sad (n=26, 62%); and 6) social life and relationship impacts (n=40, 95%), including reduced ability to participate in social activities (n=33, 79%), impaired relationships with family, friends and spouse/partner (n=32, 76%), and limitations in the types of activities one can participate in (n=24, 57%). Nearly two-thirds of participants (n=27, 64%) further reported that it was difficult to find primary care physicians, specialists, and emergency room physicians with sufficient knowledge about HP. Conclusions: Study findings suggest that patients with HP experience substantial illness burden, even on treatment, with respect to both the range and severity of symptoms and QOL impacts. A better understanding of this burden is important to inform clinician treatment decisions and address unmet treatment needs. Unless otherwise noted, all abstracts presented at ENDO are embargoed until the date and time of presentation. For oral presentations, the abstracts are embargoed until the session begins. s presented at a news conference are embargoed until the date and time of the news conference. The Endocrine Society reserves the right to lift the embargo on specific abstracts that are selected for promotion prior to or during ENDO.