Patient and Caregiver Perspectives on Terms Used to Describe Kidney Health.

BACKGROUND AND OBJECTIVES

The language used to communicate important aspects of kidney health is inconsistent and may be conceptualized differently by patients and health professionals. These problems may impair the quality of communication, care, and patient outcomes. We aimed to describe the perspectives of patients on terms used to describe kidney health.

DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Patients with CKD (=54) and caregivers (=13) from the United States, United Kingdom, and Australia participated in ten focus groups to discuss terms for kidney health (including kidney, renal, CKD, ESKD, kidney failure, and descriptors for kidney function). We analyzed the data using thematic analysis.

RESULTS

We identified four themes: (fear of the unknown, denoting impending death, despair in having incurable or untreatable disease, premature labeling and assumptions, judgment, stigma, and failure of self); (confused by medicalized language, lacking personal relevance, baffled by imprecision in meaning, and/or opposed to obsolete terms); (conceptualizing level of kidney function, correlating with symptoms and effect on life, predicting progression, and need for intervention); and (confronting reality, enabling planning and preparation, taking ownership for change, learning medical terms for self-advocacy, and educating others).

CONCLUSIONS

The obscurity and imprecision of terms in CKD can be unduly distressing and traumatizing for patients, which can impair decision making and self-management. Consistent and meaningful patient-centered terminology may improve patient autonomy, satisfaction, and outcomes.