Women, new patients report greater burden of disease in survey
Hypoparathyroidism linked to worse life quality for all functional domains
People with hypoparathyroidism experience worse quality of life, with women showing a higher burden of disease than men, according to a recent survey in Germany.
In addition, patients who’ve had the disease longer report a lower burden of their symptoms.
“Investigations on potential coping strategies might give an explanation on these findings and might also help other [hypoparathyroidism patients] deal with their disease,” researchers wrote.
The study, “Impairments in quality of life and predictors of symptom burden in patients with hypoparathyroidism: results from a population-based survey,” was published in the journal Endocrine.
Hypoparathyroidism causes wide range of symptoms
Hypoparathyroidism is characterized by lower-than-normal levels of the parathyroid hormone (PTH), a key regulator of calcium and phosphorus levels in the blood.
Low PTH levels result in low calcium and high levels of phosphorus, causing a wide range of symptoms, such as muscle cramps, pain, and twitching. It can also cause cognitive and emotional symptoms, including memory loss, anxiety, and depression.
Studies have shown that people with hypoparathyroidism experience an impaired quality of life relative to the general population. Moreover, a higher symptom frequency has been associated with a poorer life quality among these patients.
Researchers in Germany conducted an online survey to further investigate symptom burden and quality of life in people with hypoparathyroidism.
The survey was made available from October 2020 to October 2021, and was supported by the German societies of endocrinology and nuclear medicine. Patients were informed about the survey by a patient organization and by their treating physician.
Overall, 264 people with hypoparathyroidism completed the survey. Their data were compared to that of 1,006 people from the general population, with similar ages and education levels. Women were significantly more common in the patient group than in the controls (85.2% vs. 49.8%).
Quality of life was assessed using a tool known as EORTC QLQ-C30, which addresses physical, psychological, and social functioning.
Hypoparathyroidism linked especially to worse cognitive, emotional functioning
Compared to the general population, people with hypoparathyroidism had worse quality of life across all functional domains, particularly in cognitive (56.9 vs. 85) and emotional (46.9 vs. 75.1) functioning. These effects were statistically significant when controlling for age, sex, and education.
Higher education level was significantly associated with higher quality of life across all functional domains.
Symptom burden was evaluated using the disease-specific Hypoparathyroid Patient Questionnaire (HPQ28), which evaluates nine domains.
Among participants with hypoparathyroidism, 77.7% reported medium to high symptom burden. The most pronounced symptoms were loss of vitality, pain and cramps, and numbness and tingling.
Moreover, being female was significantly associated with a higher burden across all HPQ28 domains, which, along with the pronounced symptoms, included gastrointestinal symptoms, memory problems, depressive symptoms, rapid heartbeat, and neuro-vegetative issues (like sleep alterations, dysregulated eating, and fatigue).
A higher symptom burden across multiple domains has been observed in other studies, the scientists noted.
“With the data obtained in our study, we are not able to give an explanation for this association. However, one possible explanation for this is that women find it easier to talk about emotional and social problems than men,” they wrote.
“Another possible explanation might be the effect of estrogen levels on bone metabolism,” they added. “Varying estrogen levels during the menstrual cycle might have an impact on calcium levels and therefore might impact [quality of life].”
The data also showed that patients diagnosed in the last two to five years experience less depressive symptoms than those diagnosed more recently.
Patients with the disease longer may be on stable meds, have coping strategies
Additionally, those with more than five years since their diagnosis had less neuro-vegetative symptoms, loss of vitality, depression and anxiety, and rapid heartbeat.
Possible explanations may be that patients who’ve had the disease longer are on a stable treatment regimen, and may have also developed strategies to handle their disease, according to the researchers.
Patients on PTH replacement therapy, which provides a form of PTH, reported more memory problems compared to those on conventional therapy with oral calcium and vitamin D supplements.
Finally, patients monitoring their calcium levels regularly (at least every six months) reported experiencing less numbness and tingling sensations than those monitoring less frequently.
“With regular monitoring of calcium levels, the treating physician has the opportunity to adapt the current treatment to the calcium levels and therefore might reduce the risk of [low calcium] symptoms,” the researchers wrote.
The age of the patients and cause of their disease were found not to be related to symptom burden.