Abstract
ContextRecent guidelines have provided recommendations for the care of patients with chronic hypoparathyroidism. Very little is known about actual physicians’ practices or their adherence to such guidelines.ObjectiveTo describe the physicians’ practice patterns and their compliance with international guidelines.DesignThe cohort studies included were Épi-Hypo (118 physicians and 107 patients, from September 2016 to December 2019) and ePatients (110 patients, November 2019).MethodsInternet-based cohorts involving all settings at a nationwide level (France). Participants were (i) physicians treating patients with chronic hypoparathyroidism and patients with chronic hypoparathyroidism either participating in the (ii) Épi-Hypo study (Épi-Hypo 2019 patients), or (iii) Hypoparathyroidism France, the national representative association (ePatients).ResultsThe physicians’ specialties were mainly endocrinology (61%), nephrology (28%), family medicine (2.5%), pediatrics (2.5%), rheumatology (2%), or miscellaneous (4%) and 45% were practicing in public universities. The median number of pharmaceutical drug classes prescribed was three per patient. The combination of active vitamin D and calcium salt was given to 59 and 58% of ePatients and Épi-Hypo 2019 patients, respectively. Eighty-five percent of ePatients and 87% of physicians reported monitoring plasma calcium concentrations at a steady state at least twice a year. In 32 and 26% of cases, respectively, ePatients and physicians reported being fully in accordance with international guidelines that recommend targeting symptoms, plasma calcium and phosphate values, and urine calcium excretion.ConclusionsThe care of patients with chronic hypoparathyroidism involves physicians with very different practices, so guidelines should include and target other specialists as well as endocrinologists. Full adherence to the guidelines is low in France.
Highlights
Hypoparathyroidism is a rare condition caused by undetectable or inappropriately low secretion of parathyroid hormone (PTH) that is insufficient for maintaining the plasma calcium concentration (PCa) within the normal range [1]
At the time of registration, physicians were requested to fill out an online questionnaire (Supplementary material, see section on supplementary materials given at the end of this article) regarding how they monitor and provide care for patients with chronic hypoparathyroidism; the data were collected from September 2016 to November 2019 and are presented as the ‘Physicians data’
The medical specialty of physicians following up with patients in both cohorts differed, as more endocrinologists were involved in the care and follow-up of ePatients (65% vs. 57%), whereas more nephrologists were involved in the care and follow-up of Épi-Hypo 2019 patients (42% vs. 10%). ePatients were more frequently followed in a forprofit office than Épi-Hypo 2019 patients (51% vs 8%); physicians working in a public university hospital followed 38% of ePatients and 75% of Épi-Hypo 2019 patients
Summary
Hypoparathyroidism is a rare condition caused by undetectable or inappropriately low secretion of parathyroid hormone (PTH) that is insufficient for maintaining the plasma calcium concentration (PCa) within the normal range [1]. The most frequent cause is surgical removal (or ischemia) of the parathyroid glands during a parathyroidectomy (e.g. for hyperparathyroidism) or a thyroidectomy (e.g. for thyroid cancer or goiter). Other causes include inherited genetic or chromosomal disorders, as well as infiltrative or autoimmune diseases. Symptoms (such as paresthesia, cramps or a seizure) are nonspecific, and hypoparathyroidism can be asymptomatic. The diagnosis can be straightforward when symptoms occur within hours to days after neck surgery; diagnosis is sometimes delayed for years, especially in children. Diagnosing hypoparathyroidism is crucial due to its renal (nephrolithiasis, nephrocalcinosis, and chronic kidney failure), ocular (cataract), and neurological (brain development alterations, basal ganglia calcifications) effects and its resultant negative impact on the quality of life
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