Real-world costs of autosomal dominant polycystic kidney disease in the Nordics

Abstract

BackgroundThere is limited real-world data on the economic burden of patients with autosomal dominant polycystic kidney disease (ADPKD). The objective of this study was to estimate the annual direct and indirect costs of patients with ADPKD by severity of the disease: chronic kidney disease (CKD) stages 1–3; CKD stages 4–5; transplant recipients; and maintenance dialysis patients.MethodsA retrospective study of ADPKD patients was undertaken April–December 2014 in Denmark, Finland, Norway and Sweden. Data on medical resource utilisation were extracted from medical charts and patients were asked to complete a self-administered questionnaire.ResultsA total of 266 patients were contacted, 243 (91%) of whom provided consent to participate in the study. Results showed that the economic burden of ADPKD was substantial at all levels of the disease. Lost wages due to reduced productivity were large in absolute terms across all disease strata. Mean total annual costs were highest in dialysis patients, driven by maintenance dialysis care, while the use of immunosuppressants was the main cost component for transplant care. Costs were twice as high in patients with CKD stages 4–5 compared to CKD stages 1–3.ConclusionsCosts associated with ADPKD are significant and the progression of the disease is associated with an increased frequency and intensity of medical resource utilisation. Interventions that can slow the progression of the disease have the potential to lead to substantial reductions in costs for the treatment of ADPKD.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-017-2513-8) contains supplementary material, which is available to authorized users.

The societal economic burden of autosomal dominant polycystic kidney disease in the United States

“…Costs associated with productivity loss from unemployment were estimated based on the excess number of unemployed individuals with ADPKD multiplied by the age-adjusted average annual wage in the US employed population [9,16,36]. The excess number of unemployed individuals with ADPKD was computed based on the number of individuals with ADPKD aged 15-64 years old by disease stage, the employment-topopulation ratio in the ADPKD population by disease stage, and employment-to-population ratio in the US population given the average age of working-age individuals with ADPKD in each disease stage.…”

“…Costs associated with this reduced productivity were further calculated based on the number of employed individuals with ADPKD by disease stage and the average annual wage in the US employed population given the average age of working-age individuals with ADPKD in each disease stage. The number of employed individuals with ADPKD was based on the number of individuals with ADPKD by disease stage and the employment-to-population ratio in the ADPKD population by disease stage [9,[36][37][38].…”

“…The productivity loss from caregiving was defined as the number of unpaid hours of care received by individuals with ADPKD [9]. The associated costs were calculated for each disease state by multiplying the number of hours lost by the average hourly wage in the US [36].…”

“…Given that ADPKD is a life-long and progressive disorder, a substantial economic burden over the course of the disease is expected, including a variety of treatmentrelated and other costs [6][7][8][9][10][11][12][13]. Few studies to date have estimated direct and indirect costs among patients with ADPKD.…”

“…Studies in the US have predominantly focused on direct medical costs, and found that healthcare costs tended to increase with advancing disease stage and were particularly high among patients with advanced renal dysfunction, including individuals with ESRD requiring renal replacement therapy (ESRD-RRT) [8,10,11]. To our knowledge, the only study that estimated both direct and indirect costs associated with ADPKD was based on a Nordic population (i.e., Denmark, Finland, Norway, and Sweden) [9], and may therefore not be representative of the economic burden of ADPKD in the US.…”