Abstract
Autosomal dominant polycystic kidney disease (ADPKD) is the most common inherited renal disease worldwide and a significant burden to patients and societies across Europe. In the light of recent treatment advances, the need to expand the sparse knowledge about patient pathways in ADPKD has increased. As a first step the objective of this retrospective database analysis was to provide real-world data on the health care specialists (HCS) performing the initial ADPKD diagnosis. Healthcare claims data from a German sickness funds database with data on approximately 3 million patients were analyzed. Adult patients newly diagnosed with ADPKD were included - ICD-10 GM Q61.2 or Q61.3 in at least one outpatient or inpatient coding. Baseline period was defined as 12 months prior to the index diagnosis. For evaluation of baseline comorbidity a comparison group was created from a 1:50 random match. We found 1,185 newly adult patients diagnosed with ADPKD between 2012 and 2016. The mean patient age is 64 years with slightly more male patients (56%). The baseline comorbidities are generally comparable to the control group, although ADPKD patients have higher ratios of renal disease (excluding Q61.2/3) and metastatic solid tumor and lower dementia rates. Most patients (N=939, 79.2%) have no code for Chronic Kidney Disease (CKD) stage at ADPKD index diagnosis, while the remainder is mostly (N=127, 10.7%) at CDK stage 3. Most patients receive their ADPKD diagnosis in an outpatient care setting from a general practitioner (GP) or one of the related specialist fields such as urology (19%), nephrology (14%), and radiology (8%). Presumably, there is also an accumulation of incidental findings in other areas such as hospital, surgery, gastroenterology and gynecology. In this retrospective study we derived the main HCSs diagnosing ADPKD. Most patients are diagnosed at a GP or related specialist, but incidental findings do occur.
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