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High burden of hypoparathyroidism revealed in Web-based patient survey
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The effect of hypoparathyroidism on patients is multidimensional, with a high burden of illness and broad spectrum of symptoms, according to research published in Endocrine Practice.
Clinical and social challenges faced by adults managing hypoparathyroidism were revealed through findings from a Web-based study.
“The PARADOX study is an important study because currently it’s the largest we have surveying patients with hypoparathyroidism regarding their symptoms,” Bart L. Clarke, MD, of the Mayo Clinic’s division of endocrinology, diabetes, metabolism and nutrition in Rochester, Minn., told Endocrine Today. “This was people self-reporting symptoms, rather than through interviews.”
Bart L. Clarke
The comprehensive, cross-sectional questionnaire — covering demographics, diagnosis perceptions, current attitudes, medical management, current symptoms, acute episodes, comorbidities, personal life and employment — was developed with input from patients, clinical experts and the Hypoparathyroidism Association.
Clarke, along with Nandini Hadker, MA, of Trinity Partners in Waltham, Mass., and other colleagues evaluated responses from 374 adults (mean age, 49 years; 85% female) with hypoparathyroidism (mean duration, 13 years; 30.5% severe condition). Before and after diagnosis, patients reported visiting a mean of six physicians.
“We know patients have numbness, tingling and cramps when they have hypoparathyroidism, but there are a whole lot of other things they reported as well,” Clarke said. “The surprise was these other things were so common and that they’re experiencing them so much of the time, even on treatment of calcium and vitamin D that currently is considered standard.”
The majority strongly agreed on three main areas: 56% described feeling unprepared to manage the condition at diagnosis; 60% reported controlling their hypoparathyroidism as harder than expected; and 75% noted concerns about long-term medication complications.
Despite management regimens, 72% of patients reported experiencing more than 10 symptoms, for a mean of 13 hours/day, in the preceding 12 months; 79% of patients required hospital stays or ED visits.
Broader data on day-to-day burden showed 45% of patients had significant interference with their lives, 85% were unable to perform household activities and 20% experienced a change in employment status associated with the disease.
“There was a lot of things that were being reported that most of us either missed, or hadn’t heard before or weren’t expecting to hear,” Clarke said.
New treatments coming out may help to ameliorate some issues, Clarke said, including parathyroid I-84, for which an FDA decision is anticipated Oct. 24.
Clarke also called for a deeper understanding and “awareness of what the symptoms are, what patients deal with and the burden of their illness, which, like diabetes, has a fair amount of complexity and complications.” — by Allegra Tiver
For more information:
Clarke can be reached at Clarke.Bart@mayo.edu.
Disclosure: Some researchers report receiving consulting fees or research grants from NPS Pharmaceuticals Inc., or being an employee or advisory group member for the company.
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