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Abstract: TH-PO1051

Concordance Between Patient-Reported Symptoms and Provider Documentation During Ambulatory Nephrology Encounters

Session Information

Category: CKD (Non-Dialysis)

  • 2302 CKD (Non-Dialysis): Clinical, Outcomes, and Trials


  • Wulczyn, Kendra E., Massachusetts General Hospital Division of Nephrology, Boston, Massachusetts, United States
  • Mendu, Mallika L., Nephrology Division, Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts, United States
  • Kalim, Sahir, Massachusetts General Hospital Division of Nephrology, Boston, Massachusetts, United States

Accurate assessment is the first step toward management of the symptom burden faced by many patients with CKD, but whether symptoms are being routinely discussed during ambulatory nephrology encounters is uncertain. We compared patient self-reporting of 3 common CKD symptoms with providers’ documentation from the concomitant encounter note.


From 2016 to 2020, adult patients treated at a single, ambulatory, academic nephrology practice were asked to complete the Kidney Disease Quality of Life (KDQOL) instrument prior to visits. The KDQOL queries symptom severity over the prior 4 weeks, with Likert-scale response options ranging from 1 to 5. We restricted the present analysis to the symptoms of fatigue, pruritus, and dyspnea and defined a patient-reported symptom as a response of “moderately bothered (3)” or greater. Provider documented symptoms were determined by manual search of the visit note associated with each KDQOL response for the terms fatigue, pruritus, and dyspnea and their synonyms.


Over 4 years, a total of 441 adult patients completed 556 KDQOL surveys. The average eGFR was 36 ± 18 mL/min/1.73 m2, and the median time between KDQOL completion and the clinic visit was 4.2 hrs (IQR 0.1 – 125 hrs). Rates of patient-reported, moderate or greater fatigue, pruritus, and dyspnea were 28%, 18%, and 20%, respectively. Agreement between patient-reported and provider-documented symptoms was low (Figure 1). Cohen’s kappa, a coefficient of agreement corrected for random chance, was 0.17 (standard error [SE] 0.04) for fatigue, 0.07 for pruritus (SE 0.03), and 0.29 (SE 0.04) for dyspnea, suggesting fair agreement at best.


Rates of physician documentation of fatigue, pruritus, and dyspnea are considerably lower than rates of patient-reporting of the same symptoms. Tools for standardizing symptom assessment in routine nephrology care are needed to help close this gap.


  • NIDDK Support