OBJECTIVES : To estimate resource use and costs, including direct and indirect costs, in different severity levels of Parkinson’s disease in a Swedish setting.

METHODS : Patients with idiopathic Parkinson’s disease registered in the National Parkinson’s Disease Patient Registry (PARKreg), with at least one registration of Hoehn and Yahr, a scale reflecting progression of disease, in the Skåne Region, Sweden were included. Annual costs of health care visits, prescribed drugs, formal and informal care, productivity loss, aids and equipment associated with Parkinson’s disease were estimated using a database linking data from PARKreg with regional and national health care registers for the years 2013-2019.

RESULTS : In total, 1,598 observations were included. Total average cost per patient and year (2019 price level) ranged from about SEK 63,700 (≈EUR 6000) for Hoehn and Yahr I to SEK 10.6 million (≈EUR 99,700) in stage V. Formal care made up for the largest part of total costs in the most severe disease stages, 56 percent and 81 percent for Hoehn and Yahr V and IV, respectively. Productivity loss accounted for the largest part of costs in Hoehn and Yahr I and II, 58 and 51 percent, respectively. Informal care was the highest in the group with Hoeh and Yahr IV, in which it accounted for 22 percent of the total cost.

CONCLUSIONS : Severe stages of Parkinson’s disease are associated with significant societal costs, and a large proportion of the cost are carried by the municipality and informal caregivers. Thus, there are potential cost-savings to be made by optimizing the use of currently available therapies in severe stages of Parkinson's disease, and by emerging technologies with the potential to slow the progression of the disease.