Discussions of the Kidney Disease Trajectory by Elderly Patients and Nephrologists: A Qualitative Study

Schell, Jane O.; Patel, Uptal D.; Steinhauser, Karen E.; Ammarell, Natalie; Tulsky, James A.

doi:10.1053/j.ajkd.2011.11.023

« Previous Next »American Journal of Kidney Diseases
Volume 59, Issue 4 , Pages 495-503, April 2012

Discussions of the Kidney Disease Trajectory by Elderly Patients and Nephrologists: A Qualitative Study

Jane O. Schell, MD
- Department of Medicine, Duke University, Durham, NC
- Center for Health Services Research in Primary Care, Durham VA Medical Center, Durham, NC
- Address correspondence to Jane O. Schell, MD, Duke University, 2424 Erwin Hock Plaza, Ste 1105, Box 2720, Durham, NC 27705
Uptal D. Patel, MD
- Department of Medicine, Duke University, Durham, NC
- Duke Clinical Research Institute, Duke University, Durham, NC
Karen E. Steinhauser, PhD
- Center for Health Services Research in Primary Care, Durham VA Medical Center, Durham, NC
- Duke Center for Palliative Care, Duke University, Durham, NC
Natalie Ammarell, PhD
- School of Nursing, Duke University, Durham, NC
James A. Tulsky, MD
- Department of Medicine, Duke University, Durham, NC
- Center for Health Services Research in Primary Care, Durham VA Medical Center, Durham, NC
- Duke Center for Palliative Care, Duke University, Durham, NC
- School of Nursing, Duke University, Durham, NC

Received 20 August 2011; accepted 16 November 2011. published online 06 January 2012.

Background

Elderly patients with advanced kidney disease experience considerable disability, morbidity, and mortality. Little is known about the impact of physician-patient interactions on patient preparation for the illness trajectory. We sought to describe how nephrologists and older patients discuss and understand the prognosis and course of kidney disease leading to renal replacement therapy.

Methods

We conducted focus groups and interviews with 11 nephrologists and 29 patients older than 65 years with advanced chronic kidney disease or receiving hemodialysis. Interviews were audiorecorded and transcribed. We used qualitative analytic methods to identify common and recurrent themes related to the primary research question.

Results

We identified 6 themes that describe how the kidney disease trajectory is discussed and understood: (1) patients are shocked by their diagnosis, (2) patients are uncertain how their disease will progress, (3) patients lack preparation for living with dialysis, (4) nephrologists struggle to explain illness complexity, (5) nephrologists manage a disease over which they have little control, and (6) nephrologists tend to avoid discussions of the future. Patients and nephrologists acknowledged that prognosis discussions are rare. Patients tended to cope with thoughts of the future through avoidance by focusing on their present clinical status. Nephrologists reported uncertainty and concern for evoking negative reactions as barriers to these conversations.

Conclusions

Patients and nephrologists face challenges in understanding and preparing for the kidney disease trajectory. Communication interventions that acknowledge the role of patient emotion and address uncertainty may improve how nephrologists discuss disease trajectory with patients and thereby enhance their understanding and preparation for the future.

Index Words: Geriatric nephrology , doctor-patient communication , disease trajectory