A new study reports that that the majority of patients with the rare endocrine disorder hypoparathyroidism report multiple physical, emotional, and cognitive symptoms that impact their lives personally and professionally. The results were published in the journal Endocrine Practice.
Bart Clarke, MD, from the Mayo Clinic in Rochester, MN, and colleagues surveyed 374 adult patients who were diagnosed with hypoparathyroidism for ≥6 months as part of the PARADOX study, which utilized a web-based instrument that included questions on demographics, diagnosis perceptions, current attitudes, medical management, current symptoms, acute episodes, comorbidities, personal life, and employment. The majority of participants strongly agreed with feeling unprepared to manage the condition at the time of diagnosis (56%) and 60% felt that controlling the disease is more difficult than anticipated. Concerns about long-term complications stemming from their current treatment were also common (75%), with 72% experiencing >10 symptoms on an average of >13 hours per day in the preceding 12 months despite their current therapeutic regimens. While the current standard of care is large doses of oral calcium and active vitamin D for short-term disease management, patients may be at risk of soft tissue calcification, kidney stones, nephrocalcinosis, hypercalcemia, hypercalciuria and renal failure with long-term use. For patients taking large doses of calcium and vitamin D, 69% experienced comorbidities including heart arrhythmias (66%) kidney stones (35.5%), and bone fractures (16%). Patients consulted an average of six physicians regarding their condition prior to and following diagnosis and see their physician approximately four times per year. Seventy-nine percent reported hospital stays or emergency room admissions due to the disorder.
Reported physical symptoms included fatigue (82%), muscle pain/cramping (78%), paresthesia (76%), tetany (70%), joint or bone pain (67%), and pain or weakness in the extremities (53%); emotional symptoms included anxiety (59%) and depression (53%) and cognitive symptoms were mental lethargy (72%), inability to concentrate (65%), memory loss (61.5%), and sleep disturbances (57%). Eight-five percent stated that hypoparathyroidism impacted their ability to perform household activities, with 62% experiencing this on a daily/weekly basis. Of the patients who were unemployed, hypoparathyroidism was the primary cause in 72% of cases. Hypoparathyroidism also significantly affected the ability to socialize and interfered with intimacy in 32% and 35% of study participants, respectively.
The authors add that this study highlights the need for improved treatments for hypoparathyroidism due to the debilitating nature of the condition.
For more information visit NPSP.com.