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ASN leads the fight to prevent, treat, and cure kidney diseases throughout the world by educating health professionals and scientists, advancing research and innovation, communicating new knowledge, and advocating for the highest quality care for patients.

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Kidney Week

Abstract: TH-PO272

Patients' Unexpected Adverse Experiences with Dialysis and Transplantation

Session Information

Category: Dialysis

  • 701 Dialysis: Hemodialysis and Frequent Dialysis


  • DePasquale, Nicole, Duke University School of Medicine, Durham, North Carolina, United States
  • Cabacungan, Ashley N., Division of General Internal Medicine, Durham, North Carolina, United States
  • Ephraim, Patti, Johns Hopkins University, Baltimore, Maryland, United States
  • Boyer, Lapricia Lewis, Johns Hopkins University, Baltimore, Maryland, United States
  • Diamantidis, Clarissa Jonas, Duke University School of Medicine, Durham, North Carolina, United States
  • Powe, Neil R., Priscilla Chan and Mark Zuckerberg San Francisco Gen Hosp & UCSF, San Francisco, California, United States
  • Boulware, L. Ebony, Duke University School of Medicine, Durham, North Carolina, United States

Patients with end-stage kidney disease (ESKD) desire better education about what to expect from treatment, and preparatory information is associated with positive outcomes for chronic disease patients. Yet, knowledge about the expectedness of ESKD patients’ treatment experiences is limited. We studied unexpected adverse treatment experiences among dialysis patients and transplant recipients to understand how providers and pre-treatment interventions can better prepare ESKD patients for treatment experiences.


Fifty-five patients receiving medical care in Baltimore, Maryland participated in focus groups stratified by their treatment in the past year (in-center hemodialysis, home hemodialysis, peritoneal dialysis, or live donor kidney transplantation) and race (African American or non-African American). Discussions were analyzed thematically. Themes present in discussions from multiple groups were highlighted; exemplar quotes are provided.


We identified five themes. Psychological responses reflected patients’ negative psychological reactions to treatment, which ranged from feeling different from healthy peers (“I want to be like everybody else who’s not on dialysis”) to feeling suicidal (“I’m going to kill myself”). Constrained freedom of choice captured losses or limitations in recreational (“The only thing I can get on now is the treadmill”) and work (“I can’t work anymore”) activities. Treatment delivery and logistics characterized patients’ perceptions of painful (“I dislike sticking needles in my arm”), problematic (“I felt like a number in the center”), challenging (“It was hard for me to stay focused on the diet plan”), and inconvenient (“It’s not always convenient to dialyze five days a week”) treatment situations. Morbidity described patients’ experiences with treatment complications (“I’ve had a lot of operations”) and comorbidities (“I’ve had two asthma attacks”). Finances pertained to treatment-related expenses, financial strain from unemployment, and hiring caregivers to assist with treatment delivery.


Patients felt unprepared for non-clinical, logistical, and clinical aspects of ESKD treatments. Findings underscore the need for pre-treatment interventions to help patients know what to expect from and feel psychologically prepared for ESKD treatment.


  • NIDDK Support