ASN's Mission

To create a world without kidney diseases, the ASN Alliance for Kidney Health elevates care by educating and informing, driving breakthroughs and innovation, and advocating for policies that create transformative changes in kidney medicine throughout the world.

learn more

Contact ASN

1401 H St, NW, Ste 900, Washington, DC 20005


The Latest on Twitter

Kidney Week

Abstract: SA-PO492

Disease Symptoms and Poor Quality of Life (QoL) in Patients with Autosomal Dominant Polycystic Kidney Disease (ADPKD) and Preserved Kidney Function

Session Information

  • ADPKD: Clinical Studies
    October 27, 2018 | Location: Exhibit Hall, San Diego Convention Center
    Abstract Time: 10:00 AM - 12:00 PM

Category: Genetic Diseases of the Kidney

  • 1001 Genetic Diseases of the Kidney: Cystic


  • Yarlas, Aaron, Optum Patient Insights, Johnston, Rhode Island, United States
  • Oberdhan, Dorothee, Otsuka, Rockville, Maryland, United States
  • Krasa, Holly, Otsuka, Rockville, Maryland, United States
  • Maher, Stephen M., Optum Patient Insights, Johnston, Rhode Island, United States
  • Bjorner, Jakob B., Optum Patient Insights, Johnston, Rhode Island, United States

ADPKD is a hereditary progressive disease in which enlarging kidney cysts impair function and lead to kidney failure. In general, patients in early-stage chronic kidney disease [CKD] (eg, stages 1 and 2) tend to have normal QoL, but there is variability in disease burden with early-stage ADPKD. A subgroup of patients within an observational study had significant disease burden prior to renal function decline. We examine the characteristics of this subgroup.


Data were from a multi-center, longitudinal, observational study of 3,409 adult ADPKD patients (NCT01430494) with 990 and 956 patients in CKD stages 1 and 2, respectively. A subgroup of patients in stages 1 or 2 (n=42) was identified based on poor scores (≥3 points) on 2 of 3 ADPKD-Impact scale (ADPKD-IS) subscales (physical, emotional, fatigue). We examined associations of poor ADPKD-IS scores with clinical outcomes (eg, albuminuria, kidney stones, urinary tract infection [UTI]), biomarkers (eg, height-adjusted total kidney volume, estimated glomerular filtration rate, abdominal girth), and patient-reported outcome (PRO) measures (ADPKD-Urinary Impact Scale, SF-12v2® Health Survey, Brief Pain Inventory). Analyses used χ2 tests, receiver operating characteristic (ROC) curves, and Cohen’s d effect sizes for mean differences.


Patients in the poor ADPKD-IS subsample were more likely than other early-stage CKD patients to have albuminuria, hematuria, kidney pain, kidney stones, and UTI (all p <.05). ROC analyses found that biomarkers did not distinguish between the poor ADPKD-IS subgroup and other early-stage patients: all areas under the curve (AUC) ≤.60, all p >.05. All PRO scores accurately differentiated the poor ADPKD-IS subgroup from the remaining early stage sample: AUCs from .83 to .95 (all p <.0001), with large mean sample differences (all d ≥ 1.6).


A subgroup of ADPKD patients in early-stage CKD experience poor symptomatology and QOL. These patients are more likely to have albuminuria, hematuria, kidney pain, kidney stones, or UTI.


  • Commercial Support