Most people with uncontrolled, chronic hypoparathyroidism experience moderate-to-severe symptoms — even while on treatment — that lower their health-related quality of life (HRQoL), worsen their health status, and impact their ability to exercise or work, the results of a global survey show.
The survey also found that greater symptom severity in patients leads to a higher burden for caregivers.
The study, “Burden of Illness in Not Adequately Controlled Chronic Hypoparathyroidism: Findings From a 13‐Country Patient and Caregiver Survey,” was published in the journal Clinical Endocrinology.
Several studies have shown chronic hypoparathyroidism reduces patients’ quality of life. However, information on the overall burden of this disease, including symptom severity, impact on activities of daily living, and caregiver burden has been lacking, particularly in patients without adequate disease control using conventional therapy.
A team of scientists from Shire International of Switzerland, now part of Takeda, conducted a global survey to address this gap. Uncontrolled hypoparathyroidism was indicated by patient-reported persistent symptoms, and by poorly controlled calcium levels as described by their physicians.
Patients self-rated their symptoms with the Hypoparathyroidism Symptom Diary. In turn, the burden on caregivers was evaluated with the Modified Caregiver Strain Index (MCSI), which addresses the financial, physical, psychological, social, and personal aspects of serving as a longtime caregiver.
HRQoL was assessed with the 36‐item Short Form version 2 questionnaire of physical and mental health, while health status was evaluated with the Five‐Level EuroQoL 5 Dimensions. This measure comprises five categories: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression.
Data were obtained from 398 patients (mean age 51.7 years) and 207 adult caregivers (mean age 52.4 years) across 13 countries, with most responses coming from the United States, Australia, Brazil, Germany, Italy, Spain, and the United Kingdom.
The most common comorbidities — the simultaneous presence of two chronic diseases or conditions in a patient — were hypertension (41%), mental, behavioral, or neurodevelopmental disorders (29%), irregular heart beat (28%), and kidney problems (27%).
The results showed that most patients reported moderate (53%) or severe (12%) hypoparathyroidism symptoms despite treatment. A total 32% of respondents had mild symptoms, while only 3% reported having no symptoms.
Over a weeklong period, the percentage of patients reporting moderate, severe, or very severe symptoms was 73% for physical fatigue (289 patients), 55% for muscle cramps (217), 55% for heaviness in limbs (219), and 51% for tingling of the hands (201).
Less-reported symptoms included numbness (48%), muscle spasms (47%), slow or confused thinking (47%), anxiety (46%), and sadness or depression (41%).
As for the impact of the disease, 84% of patients were “somewhat” or “very much” impacted in their ability to exercise, 78% to sleep, 75% to work, and 63% in their family relationships.
The percentage of patients working full time decreased from 58% before diagnosis to 34% at the time of survey.
Having greater symptom severity was associated with lower HRQoL and health status scores.
Caregiver burden increased with symptom severity, the results showed. Patients who reported having no symptoms had the lowest caregiver burden (average score 1.7), while those with severe symptoms had the highest caregiver burden (12.5). The caregivers reported that the disease significantly impacted their own personal relationships and work productivity.
“These findings underscore the debilitating nature of chronic hypoparathyroidism, a disorder that impacts both mental and physical dimensions in the life of a patient, and will contribute toward a better understanding of the burden of illness and improving outcomes for both patient and caregiver,” the researchers said.