Abstract: SA-PO035
Patient and Caregiver Views on the Definitions and Impact of Terms Used to Describe Kidney Health
Session Information
- Educational Research
November 09, 2019 | Location: Exhibit Hall, Walter E. Washington Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Educational Research
- 800 Educational Research
Authors
- Tong, Allison, The University of Sydney, Seven Hills, New South Wales, Australia
- Levey, Andrew S., Tufts Medical Center, Boston, Massachusetts, United States
- Eckardt, Kai-Uwe, Charité – Universitätsmedizin Berlin, Berlin, Germany
- Winkelmayer, Wolfgang C., Baylor College of Medicine, Houston, Texas, United States
Group or Team Name
- KDIGO Nomenclature Initiative
Background
The terminology for kidney health is inconsistent, inaccessible, and may be conceptualized differently between patients and health professionals. These problems can impair the quality of communication, care and patient outcomes. As part of the Kidney Disease: Improving Global Outcomes (KDIGO) Nomenclature Initiative, we aimed to describe patient perspectives on the definitions and impact of terms for kidney health.
Methods
54 patients and 13 caregivers from the United States, United Kingdom and Australia participated in 10 focus groups to discuss terms and concepts used for kidney health (e.g. kidney, renal, CKD, end-stage kidney disease, kidney failure, and descriptors and measures for kidney function i.e. CKD stages). Transcripts were analyzed thematically.
Results
We identified four themes: frustrated by ambiguity (with subthemes of: confused by medicalized language, lacking relevance to personal circumstances, baffled by imprecision in meaning, uncertainty of what can be controlled, opposed to obsolete terms); making sense of the prognostic enigma (conceptualizing level of kidney function, characterizing function based on symptoms and life impact, predicting progression and need for intervention); provoking and exacerbating undue trauma (fear of the unknown, denoting impending death, losing hope in having no treatment options, premature labeling and assumptions, judgment and failure of personhood); and mobilizing self-management (needing to accept the harsh reality, prompting and motivating behavior change, learning medical terms for self-advocacy). (Fig 1)
Conclusion
The obscurity and imprecision of terms in CKD can be unduly distressing and traumatic for patients. Consistent and meaningful patient-centered terminology may improve patient autonomy, satisfaction and outcomes.