Patients May Only Partially Report Symptom Burden of Hemodialysis

Austin, Texas—Patients on maintenance dialysis experience substantial burden of symptoms that are associated with impaired quality of life. Symptom control is cited as a top research priority by patients, but results of previous studies suggest that providers may underestimate the burden on patients. Researchers at the University of North Carolina, Chapel Hill, led by Adeline Dorough, BS, conducted a qualitative study designed to characterize patient beliefs regarding hemodialysis-related symptoms and symptom reporting. The researchers utilized exploratory analyses to examine dialysis nurse and patient care technician (PCT) perspective on symptoms.

Results of the current study were reported during a poster session at the NKF 2018 Spring Clinical Meetings in a poster titled Perspectives on Hemodialysis-Related Symptoms and Symptom Reporting: A Qualitative Study.

The study included 55 semi-structured interviews with 42 patients on maintenance hemodialysis and with 13 dialysis clinic nurses and PCTs from nine US states. Thematic analysis was used to identify themes and subthemes within the data and to develop an overall schema.

The interviews with patients revealed a range of symptoms related to hemodialysis that included cramping, thirst, dizziness, nausea, and post-dialysis fatigue. The patient interviews yielded seven major themes: (1) symptoms engendering symptoms; (2) acceptance that life is dependent on a machine; (3) the intrusiveness of dialysis on daily life; (4) need to develop adaptive coping strategies; (5) creating a narrative of personal symptoms; (6) negotiating loss of control; and (7) dealing with the limits of the dialysis delivery system.

The staff interviews yielded three major themes: (1) searching for explanations of symptoms; (2) accepting the limits of their roles; and (3) dealing with the limits of the dialysis delivery system.

Patients felt they reported only partial symptom burden, while healthcare providers believed patient symptoms were fully reported. Patients indicated that perception of symptoms as normal was the underlying factor in tendencies not to fully disclose their symptoms.

“Our findings provide insight into challenges and uncertainties faced by many patients as they endure and balance interconnected, perpetuating dialysis-related symptoms with competing life priorities. Overall, patients expressed reluctance in unprompted symptom reporting and desired more engagement with their providers around symptoms,” the researchers said.

Source: Dorough A, Narendra J, Flythe J. Perspective on hemodialysis-related symptoms and symptom reporting: a qualitative study. Abstract of a poster presented at the National Kidney Foundation 2018 Spring Clinical Meetings, April 10-14. 2018, Austin, Texas.