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Do patients with high versus low treatment and illness burden have different needs? A mixed-methods study of patients living on dialysis
Author(s) -
Kasey R. Boehmer,
Kathleen H. Pine,
Samantha A. Whitman,
Paige Organick,
Anjali Thota,
Nataly R. Espinoza Suárez,
Christina M. LaVecchia,
Alexander Lee,
Emma Behnken,
Björg Thorsteinsdottir,
Aditya S. Pawar,
Annika Beck,
Elizabeth C. Lorenz,
Robert C. Albright
Publication year - 2021
Publication title -
plos one
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.99
H-Index - 332
ISSN - 1932-6203
DOI - 10.1371/journal.pone.0260914
Subject(s) - medicine , dialysis , hemodialysis , peritoneal dialysis , quartile , disease burden , end stage renal disease , kidney disease , intensive care medicine , disease , confidence interval
Background Approximately 750,000 people in the U.S. live with end-stage kidney disease (ESKD); the majority receive dialysis. Despite the importance of adherence to dialysis, it remains suboptimal, and one contributor may be patients’ insufficient capacity to cope with their treatment and illness burden. However, it is unclear what, if any, differences exist between patients reporting high versus low treatment and illness burden. Methods We sought to understand these differences using a mixed methods, explanatory sequential design. We enrolled adult patients receiving dialysis, including in-center hemodialysis, home hemodialysis, and peritoneal dialysis. Descriptive patient characteristics were collected. Participants’ treatment and illness burden was measured using the Illness Intrusiveness Scale (IIS). Participants scoring in the highest quartile were defined as having high burden, and participants scoring in the lowest quartile as having low burden. Participants in both quartiles were invited to participate in interviews and observations. Results Quantitatively, participants in the high burden group were significantly younger (mean = 48.4 years vs. 68.6 years respectively, p = <0.001). No other quantitative differences were observed. Qualitatively, we found differences in patient self-management practices, such as the high burden group having difficulty establishing a new rhythm of life to cope with dialysis, greater disruption in social roles and self-perception, fewer appraisal focused coping strategies, more difficulty maintaining social networks, and more negatively portrayed experiences early in their dialysis journey. Conclusions and relevance Patients on dialysis reporting the greatest illness and treatment burden have difficulties that their low-burden counterparts do not report, which may be amenable to intervention.

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