Patient Perspectives on Chronic Kidney Disease Monitoring and Self-Management

Self-management is required of patients with chronic diseases to limit disease progression, including regular monitoring visits for provider assessment, feedback, and adjustments to the care plan. These self-management directives involve a shift from passive to active disease management for the patient and require shifts in provider to patient communication approaches. Enabling higher levels of patient engagement can be informed by awareness of how patients discuss their encounters with providers.

Ann E. Vandenberg, PhD, MPH, and colleagues conducted a qualitative study at the Atlanta Veterans Affairs (VA) renal clinic to analyze patient discourse on ongoing chronic kidney disease (CKD) monitoring encounters for health communication strategies that motivate patient engagement. Results of the study were reported online in BMC Nephrology

[doi.org/10.1186/s12882-018-0981-7]

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The researchers extracted passages regarding CKD monitoring from transcripts of six focus groups on self-management. The transcripts represented 30 participants ≥70 years of age from the Atlanta VA renal clinic across three different CKD trajectories (stable, linear decline, and nonlinear). The extracted passages were examined using three-stage critical discourse analysis (description, interpretation, explanation) for recurring patterns across groups.

The average age of the participants was 75.1 years, 96.7% were male, and 60% were black. Inadequate health literacy ranged from 20% in the linear decline group to 27.3% in the non-linear trajectory group. There were 55 passages on physician-patient monitoring encounters. The views expressed by the patients with CKD were predominantly negative.

The comments indicated that the encounters left the patients in a state of limbo, and made them wary about their diagnosis and the factors that led to development of CKD. They were confused about their role in self-management of their CKD, and uncertain about their future.

In some cases, the encounters were depicted as helpful. The variation between encounters being viewed negatively and positively hinged on the extent to which the patient understood the goals of self-monitoring. When the goals were not well understood, the patients tended to view the encounters as unsatisfying and unsettling.

Descriptions of the negative and incomprehensible monitoring encounters described them as an unequal exchange between the patient and the provider. This theme could be viewed from the separate roles of patient and provider.

For one patient in the group with linear CKD decline, the basic features of monitoring were regular periodic visits to a nephrologist, blood draws for creatinine testing, and urine samples for albumin testing. One factor leading to the patient’s perception of an unequal exchange was delayed communication regarding results of the testing. A patient in the stable CKD trajectory group described the monitoring experience as repeated visits where he received numeric results of the laboratory testing; the patient felt the information was inadequate as presented. A patient in the non-linear CKD trajectory group indicated that he felt left out of the communication loop between his nephrologist and primary care provider. He added that the “doctor provides little” in exchange for his time and effort.

In further discussions of unfair exchanges, the veterans described providers using terms such as powerful, apathetic, or disengaged (withholding of information during monitoring encounters). Patients in each of the groups cited hearing the unhelpful phrase “keep doing what you’re doing.” The veterans felt that approach put the burden entirely on the patients, without the skills or experience to obtain information on their own.

Fragmented care was also raised as a factor that blocked coherence and progress of disease management. Two patients in the linear CKD decline group said that CKD monitoring is part of care for multiple chronic conditions and that they were shuttled between various providers and treatments.

In discussions of positive communications, the veterans defined positive exchanges as comprehensible. Some of the veterans said they were committed to monitoring and self-management because they understood the purpose of it. A participant in the stable trajectory group said that monitoring and self-management were important to “preserve what you’ve got with the kidney function you do have; it doesn’t get any better but as least you try to keep it from getting worse…” In positive exchanges, the provider is viewed as aligned with the patient’s goal to stabilize and protect the kidney. This alignment is viewed as comprehensible to the patients in these discussions.

The researchers cited several “inherent limitations” to the study, including the data being analyzed by a single investigator, the subjective nature of discourse analysis, and limiting the study to one VA site.

In conclusion, the authors said, “CKD patients’ need for both comprehensible information and for reciprocity in the monitoring encounter may best be supported by maximizing positive communication through provider messages that emphasize kidney protection and by minimizing perceptions of unequal exchange by providing consistent and contextualized information about CKD monitoring results during each monitoring encounter.”

Takeaway Points

  1. Researchers analyzed patient discourse on ongoing chronic kidney disease (CKD) monitoring encounters from discussions with 30 patients with CKD at the Atlanta Veterans Affairs renal clinic.
  2. Communications were perceived as negative when patients would undergo laboratory blood and urine testing and then were required to wait for information from providers that was meaningful and contextualized.
  3. Positive exchanges were characterized by collaboration between patient and provider working toward the mutual goal of preserving kidney function.