To evaluate the epidemiology, quality-of-life (QoL) impact, management, and cost of Paget's disease of bone.

Retrospective and prospective data were collected in a representative cross-section of office-based and hospital-based rheumatologists in France, in early 2005. Each rheumatologist included consecutive outpatients with Paget's disease seen over a 2-month period. For each patient, a medical questionnaire and the 36-item Short-Form self-questionnaire (SF-36) evaluating health-related quality of life were completed. A descriptive analysis of the patient population was conducted. Medical costs over the last 12 months were estimated.

Four hundred and forty-six medical questionnaires and 387 SF-36 questionnaires were available. Mean age was 74 years, and 58.3% of patients were male. The diagnosis was fortuitous (usually radiological) in 39.2% of cases. Complications occurred in 40% of cases; 97.8% of complications involved the joints. Bisphosphonate therapy was used in nearly 84% of patients. The SF-36 scores were significantly decreased compared to the general population, in both males and females. Total cost of management was less than one-third the cost of managing type 2 diabetes mellitus.

The results confirm the well-established characteristics of Paget's disease. Bisphosphonate therapy was widely used. Quality of life was significantly altered. The cost of management was moderate.