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Survey reflects ‘empathy gap’ in management of hypoparathyroidism
Adults with inadequately controlled hypoparathyroidism reported substantial symptoms related to the disease and health-related quality of life, with the effect compared with other severe, chronic diseases, according to findings published in Clinical Endocrinology.
“The negative impact of chronic hypoparathyroidism on health-related quality of life has been documented; however, significant knowledge gaps exist regarding the overall burden of illness associated with chronic hypoparathyroidism, including symptom severity, impact on activities of daily living, and caregiver burden, particularly among patients who are not adequately controlled on conventional therapy,” Heide Siggelkow, MD, professor of internal medicine in the Clinic of Gastroenterology and Endocrinology at the University of Gottingen, Germany, and colleagues wrote in the study background. “In a U.S.-based survey of 374 patients with hypoparathyroidism, 79% of respondents strongly agreed that most physicians do not understand hypoparathyroidism, leading to the perception of an ‘empathy gap’ between health care providers and patients.”
Siggelkow and colleagues analyzed data from 398 individuals with chronic hypoparathyroidism not adequately controlled with conventional therapy, recruited by their treating physicians, and 207 caregivers, who completed surveys conducted between October 2017 and March 2018. Participants were recruited from 13 countries. Health-related quality of life and health status were evaluated using the SF-36 version 2 and EQ-5D-5L instruments, respectively. Hypoparathyroidism-associated symptoms were assessed by a disease-specific Hypoparathyroidism Symptom Diary and caregiver burden via the Modified Caregiver Strain Index.
Surveys reveal that most participants rated their hypoparathyroidism-related symptom severity as moderate (53%) or mild (32%). Per the Hypoparathyroidism Symptom Diary, patients reported moderate, severe or very severe symptoms of physical fatigue (73%), muscle cramps (55%), heaviness in limbs (55%) and tingling (51%) during a 7-day recall period. Respondents reported taking a mean of eight pills per day.
Effects, rated as “somewhat” or “very much,” were reported by 84% of patients for ability to exercise, 78% for sleep, 75% for ability to work, and 63% for family relationships.
The researchers observed inverse relationships between self-rated overall symptom severity and health-related quality of life and health status assessment scores, noting that the greater the symptom severity, the lower the SF-36 and EQ-5D-5L scores. Caregiver burden increased with patient self-rated symptom severity.
“Strikingly, the impact of chronic hypoparathyroidism on health-related quality of life was similar to or more pronounced than for other severe chronic diseases,” the researchers wrote. “Most patients reported a high pill burden that correlated with their overall symptom severity. In addition to cognitive, emotional and physical symptoms, patients experienced an interference with the activities of daily living, employment and personal relationships. Caregivers also experienced caregiver strain and decreased work productivity that corresponded with caregiver perception of the patient’s symptom severity.” – by Regina Schaffer
Disclosures: Siggelkow reports she has served as a speaker and advisory board member for Shire. Please see the study for all other authors’ relevant financial disclosures.