Abstract: PUB289
Symptom Burden and Health Care Resource Utilization in Patients with Polycystic Kidney Disease
Session Information
Category: Genetic Diseases of the Kidneys
- 1201 Genetic Diseases of the Kidneys: Cystic
Authors
- Ali, Maham, University of Michigan Michigan Medicine, Ann Arbor, Michigan, United States
- Heung, Michael, University of Michigan Michigan Medicine, Ann Arbor, Michigan, United States
- Bhutani, Gauri, University of Wisconsin-Madison, Madison, Wisconsin, United States
- Hoover, Elise, PKD Foundation, Madison, Wisconsin, United States
- Moore, Savanna, PKD Foundation, Madison, Wisconsin, United States
- Jawed, Areeba, University of Michigan Michigan Medicine, Ann Arbor, Michigan, United States
Background
Patients with PKD experience a variety of renal and extrarenal symptoms; however, there is limited data on prevalence of symptom burden in this population. We assessed the frequency of patient reported symptoms in PKD and impact on healthcare resource utilization.
Methods
Single center retrospective study of all patients with a diagnosis of PKD (N:355) seen between 7/1/20 and 6/30/23. Patients with ESKD and those lost to follow up were excluded (n:130). Of 225 patients who met inclusion criteria, 112 (49.8%) symptom related encounters were further analyzed.
Results
Study population mean age was 48+15 yrs, and 60% were female. Mean eGFR closest to encounter was 50+29 ml/min with mean duration of clinic follow up 4+3.3 yrs to the time of encounter. Most reported symptoms were cardiovascular (30%), flank pain (16%), and urinary symptoms other than hematuria (8%) whereas 17.8% of encounters were related to non-PKD symptoms. Most common PKD related diagnosis were medication side effects (25%, of which 6% were related to Tolvaptan), hypertension (22%), urinary tract infections (9.8%), and suspected cyst rupture (7.1%). In 20.5% of encounters, the final diagnosis attributed to presenting symptoms were non-PKD related. Providers managed most symptoms with either medication change (30%) or further testing (21.4%) and referred only 6.2% of patients to the emergency department (ED).
Conclusion
Patients with PKD experience diverse symptoms affecting different organ systems. A sizable percentage of encounters were related to non-PKD associated concerns and nephrologists managed most of these without additional referrals to specialty physicians or the ED, suggesting limited additional resource utilization. The substantial proportion of non-PKD related queries may reflect the close relationship PKD patients share with their providers and the comprehensive medical care provided by nephrologists.