To Örebro University

Objective: Cushing's disease (CD) is associated with severely impaired quality of life and shortened life expectancy. Little is known about the socioeconomic consequences of CD and their impact on long-term outcome.

Methods:This was a nationwide study including 371 patients with CD (76% women), diagnosed between 1991 and 2018, and 4 matched controls per patient from the background population. Clinical data were retrieved from the national Swedish pituitary register and socioeconomic data were collected from national Swedish registers from up to 20 years before and up to 20 years after diagnosis.

Results: The proportion of patients receiving disability pensions was increased, starting 6 years before diagnosis, and increased further thereafter, mainly due to mental and musculoskeletal disorders, to reach around 20%-25% during long-term follow-up. Low educational level in patients with CD was associated with lower rates of employment and increased mortality (adjusted hazard ratio 2.5, 95% CI 1.1-5.4).

Conclusions: CD is associated with low socioeconomic status that is already noticeable 6 years before diagnosis and remains high during follow-up. Low socioeconomic status, in particular low educational level, is associated with adverse outcome. The findings indicate a need for proactive rehabilitation plans as part of standard management.