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New guideline for hypoparathyroidism stresses patient care
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The European Society of Endocrinology released a new guideline for treating hypoparathyroidism to address what the group called a lack of available resources on the rare disease for treating clinicians, according to research in the European Journal of Endocrinology.
The guideline calls for testing patients for chronic hypoparathyroidism if they have low levels of calcium and parathyroid hormone in their blood, and for a renewed focus on treating young women, who are more likely to be diagnosed with the condition.
“We can and should do better to tackle hypoparathyroidism,” Jens Bollerslev, MD, DMSc, of Oslo University Hospital in Norway, told Endocrine Today. “While it is a designated orphan disease, hypoparathyroidism is not so rare that we do not see the patients. Endocrinologists need to be more aware of following up [with] patients and take their symptoms, well-being and long-term outcomes into account.”
Jens Bollerslev
The European Society of Endocrinology (ESE) researchers analyzed more than 300 studies on hypoparathyroidism, a condition that causes blood calcium levels to fall and can have wide-ranging symptoms. It is one of the few endocrine diseases in which lacking a hormone is not treated by replacing it.
Bollerslev said many patients with hypoparathyroidism are young women, and clinicians must address any special circumstances concerning fertility, pregnancy or breast-feeding.
“We hope these guidelines give clear instructions on how to diagnose the disease and when to perform genetic testing,” Bollerslev said.
Researchers established a multidisciplinary working group 2 years ago, primarily consisting of European clinical researchers, because there were no international recommendations or treatment algorithms for clinicians to follow, according to Bollerslev.
“We were astonished to see how little evidence we could find, which we reflected in the guideline and also in the commentary by ESE clinical committee members,” Bollerslev said. “Our primary aim was to optimize patient care in the short and long term for this chronic disease. New data has emerged in the last few years, but what we really need is investigator-initiated prospective studies of modern and optimized treatment. It is a paradox that, by 2015, we still do not have an established physiological substitution therapy.” – by Regina Schaffer
Disclosure: Bollerslev reports no relevant financial disclosures. Please see the full study for a list of all other authors’ relevant financial disclosures.
Perspective
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Brendan C. Stack, Jr., MD, FACS, FACE
Hypoparathyroidism is considered an orphan disease but one that is largely iatrogenically created. It’s been accepted as unfortunate collateral damage that happens when we use surgery to treat other diseases that don’t have other treatment options; for example, the primary treatment option for thyroid cancer and parathyroid disease is surgery. For that reason, hypoparathyroidism is not something that has been discussed until recently.
Some of this new attention has culminated in the FDA approval of Natpara (parathyroid hormone, NPS Pharma) to control hypocalcemia. Right now, this treatment is a once-a-day subcutaneous injection. I would say a single injection of a very short half-life hormone does not scientifically make a lot of sense, but there are data to show that 50% of people who receive this treatment have either a reduction or elimination of necessary supplementation in the form of calcium and an improvement in perceived quality of life.
For the last 40 to 50 years, the incidence of thyroid cancer has been slowly but steadily ticking up. It’s still a small percentage of all malignancies, but from year to year it has been deemed to be the fastest growing malignancy as far as year-over-year growth and incidence. So, there’s more thyroid surgery going on, not only because the rate of cancer is going up, but the appreciation of nodular disease is going up. A lot of people are getting thyroid surgery for nodular disease that is not cancer, yet they’re exposed to the same risks, if they’re getting a total thyroidectomy, for permanent hypoparathyroidism.
So you have a lot of things converging here. Hopefully, business and pharma will take advantage of these opportunities, and research will progress quicker than it might have if this were just a regular orphan disease.
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