Patient-Reported Symptoms Compared With Nephrologist Documentation During Outpatient Visits: A Retrospective Patient-Reported Outcome Measures Study

Abstract

Rationale & objective: Communication of symptom presence between patients and nephrologists is a key step toward management of the symptom burden faced by many patients with chronic kidney disease (CKD), but whether symptoms are being routinely discussed during ambulatory non-dialysis nephrology encounters is uncertain. This study compared patient reports of 11 CKD-related symptoms with nephrologists' documentation of symptom presence in the concomitant visit note.

Study design: A retrospective analysis of patient-reported outcome measures and nephrologist documentation in the electronic health record (EHR).

Setting & study populations: Adults treated at 2 ambulatory nephrology practices within a single tertiary academic center in the United States from 2015 to 2020.

Data extraction: Patients reported symptoms using the Kidney Disease Quality of Life Short Form (KDQOL-SF) instrument before clinic visits. Symptoms were identified in the EHR-based note by natural language processing with subsequent manual identification of the context.

Analytical approach: Sensitivity and specificity of nephrologist documentation for symptoms were calculated using KDQOL responses as the reference standard and stratified by numerous patient, nephrologist, and encounter characteristics.

Results: Over 4 years, 1,534 patients completed 2,118 KDQOL surveys before visits with 45 nephrologists. Average sensitivity of nephrologist documentation for symptoms was 16% (and <40% for each individual symptom), with an average specificity of 98%. Sensitivity of documentation for symptoms was higher when the patient was female, had an estimated glomerular filtration rate of <30 mL/min/1.73 m², or had a history of cardiovascular disease. The documentation sensitivity of nephrologists was higher if they were female or were in practice for ≤7 years as compared with >25 years.

Limitations: Nephrologist documentation in the EHR may not accurately represent what was discussed during a visit.

Conclusions: Accuracy of nephrologist documentation for the presence of CKD-related symptoms in the EHR is low. Although recognizing that symptoms may have been assessed but not documented, the low proportion of clinic notes correctly identifying patient symptoms in this study suggests an opportunity for tools to streamline and standardize symptom assessment in this patient population.

Keywords: Patient-reported outcome measures; documentation accuracy; electronic health record; kidney disease quality of life; symptoms.

Figure 1

Flow diagram of clinical encounters included in the final analysis. The Kidney Disease Quality of Life (KDQOL) instrument was completed by patients before clinic visits and includes questions regarding the presence and severity of 11 symptoms related to chronic kidney disease. ∗The KDQOL was implemented at one nephrology clinic starting in December 2015 and at the second clinic starting in August 2017.

Figure 2

Patient-reported prevalence of 11 symptoms before 2,118 clinic visits at 2 general nephrology clinics, as captured on the KDQOL instrument. Symptom severity over the preceding 4 weeks was queried using a 5-point Likert scale ranging from none (1) to extremely bothered (5); moderate-to-extreme corresponds to a response of 3 or higher.