Wegener's granulomatosis - Patient-reported effects of disease on health, function, and income

Objective. To evaluate the patient-perceived effects of Wegener's granuloma tosis (WG) on health, function, income, and interpersonal relationships. Methods. A self-administered questionnaire, originally designed by the auth ors and subsequently revised with the aid of a patient focus group, was com pleted by 60 patients with well-defined features of WG, Patients had WG for a median period of 5 years. Results. Patients with chronic WG experienced substantial medical and funct ional morbidity and incurred significant socioeconomic losses. A prolonged delay in diagnosis (mean 16.8 months) and the need for multiple consultatio ns prior to initiation of therapy may have contributed to medical morbidity , Although 73% of patients perceived their disease to be in remission follo wing therapy, 78% of these patients required continuing immunosuppressive t reatment many years after diagnosis. Eighty percent of patients reported th at their normal activities of daily living were compromised. Half of those who were employed prior to diagnosis were required to modify their job or a ccept total disability (31%). A 26% (median) reduction in income within 1 y ear after diagnosis was reported. The effects of the disease on interperson al relationships with a patient's spouse, family, and friends varied consid erably, Conclusion. Advances in medical care have, for most patients, transformed W G from being a disease with a high potential for short-term mortality to be ing a chronic illness. This is the first study that has evaluated patients' assessments of the medical, socioeconomic, and quality of life effects of WG and its treatment. The effects of mortality, disability, and outpatient medical expenses indicate that the financial impact alone substantially exc eeds prior estimates of $30 million per year in charges for hospitalization s in the US.