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Abstract: FR-PO187

Quantitative Analysis: Patient Experiences and Preferences About Being Informed of a CKD Diagnosis

Session Information

Category: CKD (Non-Dialysis)

  • 1902 CKD (Non-Dialysis): Clinical, Outcomes, and Trials

Authors

  • Wright Nunes, Julie A., University of Michigan, Ann Arbor, Michigan, United States
  • Chen, Emily P., University of Michigan Center for Bioethics and Social Sciences in Medicine, Ann Arbor, Michigan, United States
  • Harrison, Sam, University of Michigan Center for Bioethics and Social Sciences in Medicine, Ann Arbor, Michigan, United States
  • Kerr, Eve, University of Michigan, Ann Arbor, Michigan, United States
  • Fagerlin, Angela, University of Utah, Salt Lake City, Utah, United States
Background

Patients with chronic kidney disease (CKD) are often unaware of their diagnosis. Doctors may be hesitant to inform patients of a CKD diagnosis and may use heterogeneous terms when doing so. We examined patients' experiences and preferences about being informed of a CKD diagnosis.

Methods

202 adults with CKD Stages 1-5 completed a cross-sectional survey between April 2015-May 2016. Survey questions focused on: patient experiences being informed about a CKD diagnosis, preferences about verbiage patients use to describe their CKD diagnosis (“Which of the following words or phrases do you use to talk about your kidney problem?”), and when patients thought they should have been told about their diagnosis (“If you had the choice, when would you have wanted to know that you had kidney disease?”).

Results

Mean (SD) age was 59 (16) years. 48% were male, 78% Caucasian, 17% African American, 73% had CKD Stage 3-5, 51% had an annual income > $50K, and 95% had ≥ H.S. education. Most patients were first told they had CKD by a kidney doctor (n=87, 47%) in an outpatient setting (n=138, 72%). Others learned of their diagnosis from primary care doctors (33%), ER doctors (7%), and "others," e.g. inpatient providers (9%). Other settings included the hospital (15%), ER (7%), and at home via phone call (6%). Thirty percent of patients reported DM and/or hypertension as the cause of their CKD, and 49% did not recall being told or did not know the cause. Most patients preferred multiple terms to refer to their diagnosis; the majority used "kidney disease" (82%) and "chronic kidney disease" (65%), followed by "decreased kidney function" and "elevated creatinine" (both 61%). Least used terms were "kidney injury" (12%) and "renal insufficiency" (18%). Ninety-six percent felt patients should be informed of their CKD diagnosis upon identification by their doctor. Only 4% felt it was acceptable for the doctor to determine if informing the patient mattered or to not inform patients at all.

Conclusion

Most patients were not told about their CKD diagnosis until they saw a kidney doctor in an outpatient setting. Nearly half did not know the cause of their CKD. Preferred verbiage is largely congruent with current guidelines. In contrast to doctors' perspectives, patients feel they should be informed of their CKD diagnosis as soon as it is identified by a doctor.

Funding

  • NIDDK Support