OBJECTIVES

: 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.

METHODS

: 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.

RESULTS

: 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.

CONCLUSIONS

: 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.