Abstract

Hypoparathyroidism (HP) is a rare endocrine disorder associated with significant physical, psychological, and cognitive symptoms that may contribute to a reduced quality of life. Scant data are available on the economic burden of illness experienced by patients with this condition. This study examined the impacts of HP on patient work productivity and out-of-pocket costs. Using a patient-centered, qualitative study design, semi-structured individual interviews were conducted by telephone with 42 adult patients with idiopathic or post-surgical HP. Transcripts were coded using qualitative analysis software and analyzed for content by theme using an adapted grounded theory approach common to qualitative research. An Independent Review Board approved the study. One-third of the study sample (n=14/42, 33%) reported that they were no longer able to work due to their HP symptoms. Among those currently employed (n=20), 90% (n=18) reported that their HP symptoms interfered with their work productivity, including interference with cognitive functioning/ability to perform cognitive tasks (n=12, 60%), absenteeism (n=8, 40%), interference with physical functioning (n=7, 35%), disruptions to work productivity caused by sudden onset of symptoms (7, 35%), limits to the type of occupation one can do (n=6, 30%), fatigue/tiredness at work (n=6, 30%), and a reduced number of work hours (n=5, 25%). For the entire study sample (n=42), 11 out-of-pocket expenses were reported, the most frequently reported included: medications and supplements (n=28, 67%); loss of income due to taking unpaid time off, reducing the number of hours regularly worked, or no longer being able to work (n=19, 45%); medical visits (n=17, 40%); and travel costs to see specialists (n=11, 26%). Findings from this qualitative study suggest that patients with HP may experience reduced work productivity and multiple out-of-pocket costs. Further research is needed to quantitatively assess the economic burden of illness associated with HP.

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