Quality of life equally impaired in hypoparathyroidism, pseudohypoparathyroidism
Patients with nonsurgical hypoparathyroidism and pseudohypoparathyroidism report experiencing an equally impaired health-related quality of life, whereas both groups of patients experience a reduced quality of life vs. patients with diabetes, heart disease and postsurgical hypoparathyroidism, according to an analysis of questionnaire data published in Clinical Endocrinology.
Both nonsurgical hypoparathyroidism and pseudohypoparathyroidism are rare diseases characterized by hypocalcemia, with either high or low levels of parathyroid hormone, respectively, Line Underbjerg, MD, PhD, a research assistant with the department of endocrinology and internal medicine at Aarhus University Hospital, Denmark, and colleagues wrote in the study background. Those with either disease are at risk for several complications, including cataract, infections, cardiovascular and renal disease, as well as neuropsychiatric disorders, such as depression and anxiety.
“Patients with these rare diseases have a reduced quality of life, and we need to take their concerns seriously despite normal biochemistry and optimal treatment,” Underbjerg told Endocrine Today. “In a clinical setting, acknowledging that complaints of impaired quality of life is a characteristic of the disease may be helpful to the patients. That fact that reduced quality of life is observed compared with norm-based material as well as patients with other chronic disorders is important.”
Researchers invited 87 patients, including 57 with nonsurgical hypoparathyroidism (40 women; mean age, 46 years; 61% genetically confirmed) and 30 with pseudohypoparathyroidism (24 women; mean age, 35 years; 30% genetically confirmed), to complete two quality-of-life questionnaires between September 2014 and April 2017: the SF-36 version 2 and WHO-5 Well-Being Index (WHO-5). The SF-36v2 consists of 36 questions grouped into subscales describing physical domains (physical function, role function, bodily pain and perception of general health) or mental domains (vitality, social functioning, role emotional and mental health). Scores ranging from 0 to 100 are calculated within each domain, with a higher score representing better self-reported health-related quality of life.
WHO-5 consists of five questions reflecting patient emotional well-being, with answers scored from 0 (worst) to 5 (best), multiplied by 4 and presented as a total percentage from 0 to 100. A well-being score of 28 or less indicates depressive affections, and a score between 28 and 50 represents poor emotional well-being.
Researchers compared questionnaire results with norm-based material, disease-specific norm-based material and patients with postsurgical hypoparathyroidism, using linear regression analysis to assess relationships between indices.
In assessing scores for WHO-5 and the SF-36v2, researchers observed no between-group differences for either questionnaire.
Compared with the overall population, researchers observed a reduced score for all eight subdomains of the SF-36v2 for patients with nonsurgical hypoparathyroidism (P < .01 for all), whereas patients with pseudohypoparathyroidism score lower in five domains, including all physical domains, social function and mental health. Additionally, women with pseudohypoparathyroidism had lower scores in role physical and bodily pain vs. men with and without the condition, according to researchers.
In comparing patients with nonsurgical hypoparathyroidism and pseudohypoparathyroidism with a cohort of Danish patients with postsurgical hypoparathyroidism (n = 55), researchers found that both groups of patients scored lower in the domains of physical function, social function and mental health. Overall patients with nonsurgical hypoparathyroidism had a lower mental component score (P < .01) and a borderline significantly lower physical component score (P = .06) vs. those with postsurgical hypoparathyroidism, whereas there was no difference in overall scores between patients with pseudohypoparathyroidism and those with postsurgical hypoparathyroidism.
Compared with two large groups of patients with diabetes and heart disease, researchers found that patients with nonsurgical hypoparathyroidism had a lower overall mental component score as well as a lower score in three subdomains; however, there were no between-group differences for overall physical component score or any of the physical component subdomains.
Researchers observed no between-group differences in either overall mental component scores or overall physical component scores for patients with pseudohypoparathyroidism and patients with diabetes or heart disease.
The researchers noted that the findings represent one of the largest quality-of-life assessments among those with nonsurgical hypoparathyroidism and pseudohypoparathyroidism, and results should be considered in the daily care of patients.
“Although there is a lack of knowledge on how to improve [quality of life] in patients, acknowledging that complaints of impaired [quality of life] is a characteristic of the disease may be helpful to the patients,” the researchers wrote. – by Regina Schaffer
For more information:
Line Underbjerg , MD, PhD, can be reached at Aarhus University Hospital, Department of Endocrinology and Internal Medicine, Nørrebrogade, 8000 Aarhus, Denmark; email: firstname.lastname@example.org.
Disclosures: Underbjerg reports she has received grants and speaking fees from Shire paid to her institution. Two other study authors report receiving grants, consultant or speaking fees from Alexion, Amgen or Shire.