Perspectives on symptom experiences and symptom reporting among individuals on hemodialysis

Abstract

Background: Individuals on hemodialysis bear substantial symptom burdens, but providers often underappreciate patient symptoms. In general, standardized, patient-reported symptom data are not captured during routine dialysis care. We undertook this study to better understand patient experiences with symptoms and symptom reporting. In exploratory interviews, we sought to describe hemodialysis nurse and patient care technician perspectives on symptoms and symptom reporting.

Methods: We conducted semi-structured interviews with 42 US hemodialysis patients and 13 hemodialysis clinic personnel. Interviews were conducted between February and October 2017 and were analyzed using thematic analysis.

Results: Seven themes were identified in patient interviews: (i) symptoms engendering symptoms, (ii) resignation that life is dependent on a machine, (iii) experiencing the life intrusiveness of dialysis, (iv) developing adaptive coping strategies, (v) creating a personal symptom narrative, (vi) negotiating loss of control and (vii) encountering the limits of the dialysis delivery system. Overall, patient symptom experiences and perceptions appeared to influence symptom-reporting tendencies, leading some patients to communicate proactively about symptoms, but others to endure silently all but the most severe symptoms. Three themes were identified in exploratory clinic personnel interviews: (i) searching for symptom explanations, (ii) facing the limits of their roles and (iii) encountering the limits of the dialysis delivery system. In contrast to patients, clinic personnel generally believed that most patients were inclined to spontaneously report their symptoms to providers.

Conclusions: Interviews with patients and dialysis clinic personnel suggest that symptom reporting is highly variable and likely influenced by many personal, treatment and environmental factors.

FIGURE 1

Thematic schema for patient interviews. Patients described perpetuating, interconnected physical and mood symptom cycles. A general resignation that their lives depended on machines appeared to influence how patients experienced these symptom cycles. This reality colored how patients understood, perceived and coped with symptoms as well as how they interacted with the dialysis care system. The figure displays the symptom cycle (first theme) as experienced through the lens of a machine-dependence reality (second theme). The remaining five themes (experiencing the life intrusiveness of dialysis, developing adaptive coping strategies, creating a personal symptom narrative, negotiating loss of control and encountering the limits of the dialysis delivery system) were experienced through this lens, which transformed and informed symptom experiences, perceptions and responses differently across patients. Bidirectional arrows indicate theme interrelationships. Collectively, the seven identified themes appeared to influence patient tendencies to report (versus not) symptoms to their care teams.