Do patients with high versus low treatment and illness burden have different needs? A mixed-methods study of patients living on dialysis

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....

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Bibliographic Details
Published in:PloS one 2021-12, Vol.16 (12), p.e0260914-e0260914
Main Authors: Boehmer, Kasey R, Pine, Kathleen H, Whitman, Samantha, Organick, Paige, Thota, Anjali, Espinoza Suarez, Nataly R, LaVecchia, Christina M, Lee, Alexander, Behnken, Emma, Thorsteinsdottir, Bjorg, Pawar, Aditya S, Beck, Annika, Lorenz, Elizabeth C, Albright, Robert C
Format: Article
Language:English
Subjects:
Activities of daily living
Adult
Aged
Aged, 80 and over
Biology and Life Sciences
Care and treatment
Chronic illnesses
Chronic kidney failure
Clinical outcomes
Complications and side effects
Computer and Information Sciences
Cost of Illness
Demographics
Dialysis
End-stage renal disease
Female
Hemodialysis
Humans
Hypertension
Illnesses
Interviews
Kidney diseases
Male
Medicine and Health Sciences
Middle Aged
Mixed methods research
Patient outcomes
Patients
Peritoneal dialysis
Quartiles
Renal Dialysis
Research and Analysis Methods
Social interactions
Social Networking
Social networks
Social organization
Social Sciences
Social Support
Travel
Workloads
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Summary: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. 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. Quantitatively, participants in the high burden group were significantly younger (mean = 48.4 years vs. 68.6 years respectively, p =
ISSN:1932-6203
1932-6203
DOI:10.1371/journal.pone.0260914