Patients Report Reduced Quality of Life Linked to Symptoms
A significant proportion of people with hypoparathyroidism reported quality-of-life impairments, which were associated with more symptoms and an inability to work, according to a recent German survey study.
A lack of understanding about the disease from potential employers, physicians, and others also may underlie these declines in quality of life, the researchers said.
Hypoparathyroidism “needs to be recognised as a disease which might be associated with impaired QOL [quality of life] and affect daily living,” the team wrote.
“Symptom management is crucial for improving QOL in [these] patients but socioeconomic factors like work-ability need to be considered when treating” hypoparathyroidism patients, they added.
The study, “What are the predictors of impaired quality of life in patients with hypoparathyroidism?” was published in the journal Clinical Endocrinology.
Hypoparathyroidism is characterized by low levels of the parathyroid hormone — a regulator of the body’s calcium levels — resulting in depleted blood calcium, called hypocalcemia. Consequently, patients experience a range of symptoms, including numbness in the fingers and toes, muscle pain, fatigue, and seizures. Many patients also report impairments in quality of life.
To shed light on the specific factors that may contribute to reduced life quality, the team conducted an online patient survey covering five components of the European Organization for Research and Treatment of Cancer’s Quality of Life Core Questionnaire (EORTC QLQ-C30). Those components were: physical, role, emotional, cognitive, and social functioning. Symptom burden, education, and work status also were assessed.
Overall, data were analyzed from 264 people (225 females) with a mean age of 54.5. All had been diagnosed with hypoparathyroidism Four patients were excluded because their diagnosis was made less than six months before the study, so their hypoparathyroidism could be transient.
Impaired functioning was common among the group. Specifically, impairments were reported in 76% of people for emotional function, 60.8% of people for physical function, and 65.5% for cognitive function.
Additionally, 40.4% of people reported reduced role functioning, which is related to involvement in life situations including family life, leisure activities, and community involvement. Further, 40.6% had diminished social functioning.
Symptoms were assessed using the Hypoparathyroid Patient Questionnaire (HPQ-28), on which a higher score indicates a greater symptom burden. About 75% of participants reported a medium (HPQ-28 score of 0.5 or higher and under 1.5) or high (HPQ-28 score higher of 1.5 or above) burden.
In the analysis, symptoms were significantly associated with quality of life functional scales. Those patients with high symptom burden were more likely to experience significantly impaired function across all five functional domains than those in the medium or low (HPQ-28 score less than 0.5) groups.
“The occurrence of [hypoparathyroidism-]related symptoms is strongly associated with QOL, indicating the need to optimize treatment to reduce symptoms and not solely rely on laboratory parameters,” the researchers wrote.
For 92% of participants, a previous surgery was the cause of hypoparathyroidism; these patients had lower odds of physical impairments compared with patients with a non-surgical cause.
This reduced risk might be related to the close monitoring these patients receive in the hospital after surgery, which enables clinicians to promptly address physical problems, the researchers suggested.
People who were unable to work had higher chances of reporting physical, role, and social impairments than those who were employed, the study found.
Open-ended written responses from study participants revealed that patients believed that potential employers and public authorities have little-to-no information about hypoparathyroidism and were unaware of its severity.
“This empathy gap related to work might be an explanation for the association of being unable to work and QOL,” the researchers wrote.
The gap does not just relate to employers, the researchers added. Many patients also believe that their doctors do not understand their condition or its burden.
“The recognition of [hypoparathyroidism] as a disease which might severely influence daily living and especially the work environment as well as the adoption of supportive opportunities for coping with the disease are of major importance for reducing QOL impairments,” the team concluded.