Effect of Wegener's granulomatosis on work disability, need for medical care, and quality of life in patients younger than 40 years at diagnosis

Abstract

Objectives. To evaluate the effects of Wegener's granulomatosis (WG) on employment status, work disability, and need for medical care of 60 consecutive WG patients aged <40 years at diagnosis. Methods. Sixty WG patients (26 male, 34 female) with a median age of 36 years (range 17-48 years) and a median duration of disease of 39 months (range 0 -228 months) completed self-administered questionnaires on hospitalization, medical care, and employment status plus the Medical Outcomes Study-Short Form-36 (SF-36) estimating their healthrelated quality of life. Results. Thirty-two of the 60 patients reported full-or part-time employment more than 3 years after diagnosis. Only 14 of the 51 patients employed at diagnosis (27%) were currently receiving a permanent work disability pension due to WG. Two additional patients had lost work because of WG. Women who were employed at diagnosis had a nearly 3-fold higher risk of losing their jobs compared with men (P ‫؍‬ 0.0006). There were no differences with regard to age at diagnosis, disease duration, disease severity, or education level between employed and unemployed patients. Employed patients had missed a median of 14 workdays (range 0 -18 days) due to WG within the past 12 months. More than half of all patients (33 of 60) had been hospitalized during the previous 12 months because of WG. Ninety-three percent of all patients had visited their physician once or more per month, more than half of them at least once per week, regardless of employment status, severity of disease, or type of current medication. Unemployed WG patients experienced significant reductions in social and physical function and in their perceived degree of general health as assessed by the SF-36. Conclusions. Twenty-seven percent of WG patients younger than age 40 who were employed at diagnosis received permanent work disability within a disease duration of 39 months. Unemployment is followed by a considerable reduction in disease-related quality of life compared with employed patients, independent of severity and extent of disease. Furthermore, because patients were followed closely by an interdisciplinary team, a high rate of hospitalization and frequent visits to physicians resulted.

Employment status and quality of life in patients with chronic obstructive pulmonary disease

“…So far, a few cross-sectional studies concerning patients with mental illness (Van Dongen 1996), traumatic brain injury (O'Neill et al 1998), Wegener's granulomatosis (Reinhold-Keller et al 2002) and end-stage renal disease (Blake et al 2000) suggest that being employed despite chronic illness is associated with better QoL. The applicability of this observation for patients with COPD was still unclear.…”

Clinical and Economic Burden of Antineutrophil Cytoplasmic Antibody–associated Vasculitis in the United States

“…Two older studies focused on inpatient admissions. In a study by Reinhold-Keller, et al, 60 German patients with GPA were interviewed about their healthcare use 22 . In the 12 months before the survey, 33 patients were hospitalized and the majority reported seeing a physician more than once every 3 months 22 .…”

“…In a study by Reinhold-Keller, et al, 60 German patients with GPA were interviewed about their healthcare use 22 . In the 12 months before the survey, 33 patients were hospitalized and the majority reported seeing a physician more than once every 3 months 22 . In an analysis using New York State hospitalization data and extrapolating to the United States, Cotch, et al estimated that GPA disease resulted in 12,332 hospitalizations and $148.3 million in hospital charges 23,24 .…”

Quality of Life Issues in Vasculitis

“…Moreover, daily activities, like being able to shower, shave, chew, and walk without difficulty or losing balance, were all ranked among the top ten most important quality of life issues for patients living with giant cell arteritis (Hellmann et al, 2003), while patients with Behçet's disease noted negative changes to their ability to engage in usual activities and mobility (Ertam et al, 2010). Additionally, patients who were unemployed (Reinhold Keller et al, 2002), had active disease (Mumcu et al, 2006;Ertam et al, 2009), or were in more pain (Koutantji et al, 2003) were more likely to report greater physical role limitations.…”