New Survey Highlights the Challenges Patients Face and the Need for More Awareness.
Voices of Hypopara Survey
Hypopara affects approximately 80,000 patients in the United States (U.S.) alone and 200,000 patients in the U.S., Europe, Japan and South Korea.
The Voices of Hypopara survey was conducted by the HypoPARAthyroidism Association with support from Ascendis Pharma to highlight the experiences of patients in the U.S. who are living with hypopara. 146 members responded and answered questions about their diagnosis, symptoms, treatment and medical care.
Patient Journey: Diagnosis
Difficulties in the hypopara patient journey begin as early as diagnosis. Half of the survey respondents reported that they needed more than 5 physician visits to be diagnosed with hypoparathyroidism. Diagnosis took more than a year for 25% of participants and more than a decade for 10%.
Patient Journey: Treatment and Care
Nearly all patients received standard-of-care treatment (calcium and active vitamin D), and the majority felt their treatment was moderately to extremely burdensome. In addition, almost all patients changed their medication regimens at some point, with 61% changing more than five times since being diagnosed in order to manage hypopara symptoms.
Patient Journey: Calcium Crashes
Despite frequent regimen changes, hypopara patients still experience "calcium crashes", which are potentially life-threatening decreases in blood calcium levels, which can cause an inability to speak or breathe, involuntary or painful muscle spasms and seizures. Calcium crashes may require IV infusions of calcium in order to restore the blood calcium level. In this survey, an overwhelming 69% of participants reported experiencing a calcium crash at least once in the past year. Of these, 43% reported calcium crashes weekly or monthly, and 4% daily.
Additionally, approximately 42% visited an ER and/or urgent care facility in the last year to address their symptoms; half of these visited two to four times, and another 18% visited the ER and/or urgent care even more often in the past year.
63% of those who visited the ER and/or urgent care received IV calcium to manage their calcium crash; a quarter of these patients received IV calcium 5 or more times in the past year.
56% of participants who visited the ER and/or urgent care felt the staff did not know how to manage a hypocalcemic event/calcium crash, highlighting the need for broader education about hypopara, particularly in the ER or urgent care setting
Patient Journey: Challenges
Hypopara presents a number of challenges for patients, including reduced quality of life, managing symptoms, maintaining psychological well-being and preventing long-term complications.
In the short term, symptoms include weakness, severe muscle cramps (tetany), abnormal sensations such as tingling, burning and numbness (paresthesia), memory loss, impaired judgment and headache. Over the long term, this complex disorder can cause major complications, such as calcium deposits occurring within the brain, eye, blood vessels and kidneys. Patients with hypopara have a 4 to 8 fold increase in risk of kidney disease. For participants concerned with preventing long-term complications, 29% were extremely concerned.
The most frequently cited challenges of hypopara was on the quality of life (87%), preventing long-term complictions (87%) and in the controlling of daily symptoms (78%).
A majority of parcipants also indicated that their hypopara has negavely impacted their level of employment.
When asked about the impact of COVID-19 on their ability to manage their disorder, the majority (52%) reported no or minimal impact. However, 14% reported a significant impact. Reasons for those who reported an impact were not being able to see a physician or get roune labs, and an overall increase in anxiety or fear.
Voices of Hypopara Survey Fact Sheet
Hypoparathyroidism is a hard disease to live with. The Voices of Hypopara survey reveals the complex dificulties patients endure with this condition and in finding adequate treatment.
The Hypoparathyroidism Association is very pleased to offer the full Fact Sheet which contains additional detail and explanation.
Click the image to download.
This information is provided for educational purposes only. It should not be used for diagnostic or treatment purposes. If you wish to obtain more information about this disorder, please contact your personal physician.