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    'Crashing' Onto Dialysis: Diagnosis Experiences, Coping Styles and Strategies, and Treatment Decision-Making Preferences Among Patients with Unexpected End-Stage Renal Disease

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    Urbanski_temple_0225E_14170.pdf
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    Genre
    Thesis/Dissertation
    Date
    2020
    Author
    Urbanski, Megan cc
    Advisor
    Gardiner, Heather M.
    Committee member
    Dumenci, Levent
    Gadegbeku, Crystal
    Siminoff, Laura A.
    Waterman, Amy D.
    Department
    Public Health
    Subject
    Public Health
    Social Research
    Chronic Kidney Disease
    Dialysis
    End-stage Renal Disease
    Unplanned
    Urgent
    Permanent link to this record
    http://hdl.handle.net/20.500.12613/259
    
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    DOI
    http://dx.doi.org/10.34944/dspace/243
    Abstract
    Chronic kidney disease is an urgent public health problem in the U.S., affecting 15% of all adults, and more than 740,000 have progressed to end-stage renal disease (ESRD), requiring life-sustaining renal replacement therapy (RRT). ESRD has devastating health, quality-of-life, and economic consequences, rendering most patients unable to maintain employment and costing Medicare $36 billion in 2017. Arguably, the most disadvantaged subgroup is the subset of patients that received no or minimal pre-ESRD nephrology care, which currently accounts for one third of the total ESRD population. This subgroup suffers increased morbidity and mortality, and has limited access to kidney transplantation, the optimal RRT. Despite this subgroup representing a large minority of the ESRD patient population, there has been no U.S.-based examination of their ESRD diagnosis experiences, coping styles and strategies, and RRT decision-making preferences. Therefore, we conducted a study that compared the ESRD diagnosis experiences, coping styles and strategies, and RRT decision-making preferences among patients with varying amounts of pre-ESRD nephrology care. We also assessed nephrologists’ current practices and perspectives on the manner and timing of RRT education for patients with varying amounts of pre-ESRD care. This mixed methods study provides a comprehensive understanding of the diagnosis experiences, coping styles and strategies, and RRT decision-making preferences of patients facing sudden and unexpected ESRD diagnosis. The study contributes important knowledge about this subgroup of patients that can influence and improve health care delivery. The results of this research will inform future intervention-based investigations to improve care for patients with minimal or no pre-ESRD nephrology care.
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