Disease Burden of Patients Living With Hypoparathyroidism: Results From the Voices of Hypopara Survey
Authors: Murphy Deborah , Sanders Bob , Gulley Loretta , Knoefler Ami , Smith Alden , Park Minyoung , Tsao Susana , Mourya Sanchita , Rubin Mishaela 
Published: May 2021

Background: Hypoparathyroidism (HP) is a rare disease that is characterized by insufficient levels of parathyroid hormone, resulting in hypocalcemia, hyperphosphatemia and hypercalciuria. Standard of care (SoC) consists of calcium and active vitamin D supplementation. Some patients may suffer from “calcium crashes”, sudden hypocalcemia symptoms that can be severe enough to require a visit to the emergency room (ER) or urgent care. Conversely, chronic use of SoC supplements can also increase risk of hypercalciuria and renal failure. The HypoPARAthyroidism Association (HPA), a nonprofit organization dedicated to improving the lives of hypoparathyroid patients, developed the “Voices of Hypopara” survey to capture the journey of patients with HP in the US. Methods: The online survey was distributed to all HPA members (approximately 1,000) in May 2020. Questions focused on evaluating patients’ experiences including diagnosis, treatment, quality of care, and impact on daily living. Results: The survey was completed by 146 HPA members (89% female; mean age 51). Most participants reported they are currently taking SoC (calcium 91%; active vitamin D 77%). However, over half felt that this did not optimally address their disease and 29% were extremely concerned about hypocalcemia despite supplementation. Many (69%) felt that taking SoC was moderately to extremely burdensome. More than two-thirds (69%) of respondents reported a “calcium crash” in the past year; of these, 43% reported calcium crashes monthly or weekly. Almost half (42%) of all participants required a visit to an ER/urgent care in the last year as a result of HP symptoms; of these, 56% believed that the staff was inexperienced with management of a calcium crash. More than 60% of participants checked serum calcium levels at least every couple of months at a physician’s office or lab in the past year, with 36% checking monthly or more frequently; the majority of respondents (70%) said the reason was due to symptoms of hypocalcemia. Participants viewed an at-home device for measuring serum calcium, phosphate, and magnesium levels as one key approach to manage their HP symptoms (47% ranked as “most preferred”), followed by more effective medications as the second most preferred option (23%). Almost all (99%) responded that they would use an at-home monitoring device and would test frequently. Conclusions: Results from this survey underscore the high disease burden of patients with HP, highlighting sudden hypocalcemic episodes as a key morbidity despite treatment with calcium and active vitamin D supplementation, and sub-optimal management by clinicians as an impediment to optimal treatment. These findings reinforce the need for more frequent, easily accessible, and real-time serum calcium level monitoring device, more efficacious therapies, and greater disease understanding among health care workers to best manage patients with HP.