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

doi:10.1053/j.ajkd.2011.11.023

American Journal of Kidney Diseases

Volume 59, Issue 4, April 2012, Pages 495-503

https://doi.org/10.1053/j.ajkd.2011.11.023 Get rights and content

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.

Section snippets

Study Design, Setting, and Participants

We conducted focus groups and one-on-one semistructured interviews to explore how elderly patients and nephrologists understand and discuss the kidney disease trajectory and analyzed them using a qualitative approach.¹² Qualitative methods are best suited for gathering rich descriptive information about a phenomenon for which few data or conceptual understanding exist.¹³

Participants were recruited from one academic setting, Duke University Health System, and one community nephrology practice in

Results

Letters were sent to 142 patients. Of these, 103 were called and 29 attended an interview or focus group (Fig 1). Two focus groups and one one-on-one interview were conducted for the 11 patients with CKD. For the 18 hemodialysis patients, 16 one-on-one interviews and one focus group were conducted. Hemodialysis patients preferred conducting interviews while receiving dialysis treatment, which necessitated primarily one-on-one interviews in this group. Two focus groups and one one-on-one

Discussion

This study highlights how discussions and understanding of the trajectory of kidney disease are challenging for both patients and nephrologists. Patients' strong emotions serve as a barrier to understanding their disease course and preparing for the future. Many also described lacking important information about their disease and its treatment. In turn, nephrologists expressed difficulty helping patients understand and prepare for a disease that is largely asymptomatic and difficult to predict.

Acknowledgements

We thank Dr Robert Gutman for support and assistance in conducting this study.

Support: This study was supported by fellowship grant T32 HS00079 from the Agency for Healthcare Research and Quality.

Financial Disclosure: The authors declare that they have no relevant financial interests.

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: Originally published online January 6, 2012.

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

Background

Methods

Results

Conclusions

Section snippets

Study Design, Setting, and Participants

Results

Discussion

Acknowledgements

USRDS 2010 Annual Data Report: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States

Octogenarians and nonagenarians starting dialysis in the United States

Ann Intern Med

Patterns of functional decline at the end of life

JAMA

Symptom burden, depression, and quality of life in chronic and end-stage kidney disease

Clin J Am Soc Nephrol

Psychosocial aspects of chronic disease: ESRD as a paradigmatic illness

J Am Soc Nephrol

Anxiety disorders in adults treated by hemodialysis: a single-center study

Am J Kidney Dis

Existential and supportive care needs among patients with chronic kidney disease

J Pain Symptom Manage

Prevalence, severity, and importance of physical and emotional symptoms in chronic hemodialysis patients

J Am Soc Nephrol

Clinical practice guidelines for hemodialysis adequacy, update 2006

Am J Kidney Dis

Can 40 seconds of compassion reduce patient anxiety?

J Clin Oncol

Improving physicians' interviewing skills and reducing patients' emotional distressA randomized clinical trial

Arch Intern Med

Basics of Qualitative Research

Rigour and qualitative research

BMJ

The value of “life at any cost”: talk about stopping kidney dialysis

Soc Sci Med

“Is there life on dialysis?”: time and aging in a clinically sustained existence

Med Anthropol

Users' guides to the medical literature: XXIIIQualitative research in health care B. What are the results and how do they help me care for my patients? Evidence-Based Medicine Working Group

JAMA

The Discovery of Grounded Theory: Strategies for Qualitative Research

The patient-physician relationshipPatient-physician communication during outpatient palliative treatment visits: an observational study

JAMA

Can oncologists detect distress in their out-patients and how satisfied are they with their performance during bad news consultations?

Br J Cancer

“What concerns me is …” Expression of emotion by advanced cancer patients during outpatient visits

Support Care Cancer

How to recognize and manage psychological distress in cancer patients

Eur J Cancer Care (Engl)

Stressors, coping mechanisms and quality of life among dialysis patients in Australia

J Adv Nurs

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