People with hypoparathyroidism living in the U.S. still struggle to receive proper medical care, particularly during emergency room visits, according to findings of a survey conducted by the HypoPARAthyroidism Association (HPA).
The results of the HPA’s “Voices of Hypopara” survey were released in support of World Hypoparathyroidism Awareness Day, which takes place annually on June 1st.
Hypoparathyroidism is caused by low levels of the parathyroid hormone (PTH) in the blood, leading to a marked decrease of calcium, which is needed for bone health, muscle movement, and healthy nerves. This medical condition is known as hypocalcemia.
In most cases, the condition is triggered after people undergo thyroid (neck) surgery and end up with sustained damage to their parathyroid glands, which are responsible for producing PTH. However, hypoparathyroidism also may occur in response to autoimmune or genetic issues — or even without a known cause.
The Voices of Hypopara survey was conducted by the HPA, with support from Ascendis Pharma, to gather patient feedback on their diagnoses, symptoms, treatment, and medical care.
A total of 146 hypoparathyroidism patients living in the U.S. completed the anonymous survey, conducted online during April and May 2020. Most respondents were women (89%), had an average age of 51, and were diagnosed with hypoparathyroidism after undergoing neck surgery (80%). More than half (60%) of the participants had been living with the condition for more than five years.
For many patients, the challenges of hypoparathyroidism started before their initial diagnosis. Half of the participants reported that they received their diagnosis only after five or more doctor visits. A quarter of the respondents claimed that it took more than a year to receive their final diagnosis, while 10% said more than a decade passed before they were properly diagnosed.
Nearly all patients received standard-of-care treatment with calcium and active vitamin D supplements. However, most felt the treatment was quite burdensome. More than half (61%) ended up changing their treatment regimen more than five times after being diagnosed to manage their symptoms.
Despite frequent treatment adjustments, 69% of the respondents reported experiencing a “calcium crash” — a potentially life-threatening condition in which calcium dips below critical levels, resulting in breathing difficulties, seizures, and painful muscle spasms — at least once in the previous year.
Among these patients, 43% claimed to have had these “calcium crashes” on a weekly or monthly basis, and 4% on a daily basis.
Additionally, nearly half (42%) of the survey participants reported that they had gone to the emergency room (ER) and/or an urgent care facility in the previous year due to their symptoms. In half of the cases, the patients visited the ER and/or urgent care facility two-to-four times within a period of one year; 18% of them reported even more frequent visits.
Nearly two-thirds (63%) of the patients who made such visits reported receiving intravenous (into-the-vein) calcium to control their “calcium crash.” A fourth received IV calcium five times or more within a year.
Approximately three-quarters (73%) of the patients who had visited the ER and/or urgent care facility in the past year reported having an average-to-terrible experience regarding the medical care they received. As a result, nearly half of them said they were less likely to return to seek treatment for their hypoparathyroidism symptoms.
More than half (56%) of the patients said they felt the ER or urgent care staffs lacked the knowledge to properly manage their hypocalcemia and provide proper medical care for a “calcium crash.”
“These striking results show that, while we’ve made great progress, we have more work to do to educate the medical community and public about hypopara, especially in the emergency setting,” Deb Murphy, president and vice chair of the Board of Directors of the HypoPARAthyroidism Association, said in a press release.
“It was heartening to see that those participants who cited positive ER experiences said they played a key role in educating the staff about hypopara. Patients driving medical education and empowering themselves — I can’t think of anything more exciting to see,” Murphy said.
“By continuing on this path, I know we’ll be able to make a difference,” she added. “It is an honor to be able to present the results of our survey and give voice to patients with hypopara on World Hypoparathyroidism Awareness Day.”
Asked about the biggest challenges they had to face and overcome, most patients surveyed said it was the need to minimize the impact of hypoparathyroidism on their quality of life (87%) and to prevent long-term complications (87%). Most also cited the challenges of keeping their symptoms under control on a daily basis (78%). Many respondents also noted that their condition had a negative impact on their professional lives.
“As an endocrinologist, managing hypoparathyroidism is one of the more complicated and challenging conditions,” said Mishaela Rubin, MD, a member of HPA’s Board of Medical Advisors.
“Greater awareness is needed across the healthcare community,” she said. “It is also critical that patients and physicians work together to anticipate and manage all the different aspects of this disease to minimize its day-to-day impact, and to reduce its burden to the healthcare system.”
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