Session Time: 3:15pm-4:00pm
Presentation Time: 3:30pm-4:00pm
*Purpose: The aim of this study was to explore renal replacement therapy (RRT) knowledge and decision-making experiences and preferences among patients with varying amounts of pre-ESRD nephrology care.
*Methods: A mixed-methods design was used, and semi-structured interviews were conducted with patients newly diagnosed with ESRD with varying amounts of pre-ESRD nephrology care, exploring their RRT knowledge and decision-making experiences and preferences. Participants were grouped according to amount of pre-ESRD nephrology care. Interviews were analyzed using applied thematic analysis and codes were created deductively and inductively. Two members of the research team independently coded each interview transcript. Relevant sociodemographic data were also collected, and 3 decision-making validated measures were administered. Data collection is ongoing.
*Results: Thus far, 41 patients participated. Interim analyses reveal that RRT information delivery and decision-making preferences vary according to amount of pre-ESRD nephrology care and the following qualitative themes have emerged: (1) perception of a decision point; (2) desire for provider treatment recommendations; (3) information deficits; and (4) barriers to pursuing alternative treatments. Participants with no history of pre-ESRD nephrology care had lower mean scores on the 9-Item Shared Decision Making Questionnaire than patients who had been under the care of a nephrologist (63.3 vs 79.5), suggesting they experienced less shared decision-making in the RRT decision, and higher mean scores on the Decision Regret Scale (19.4 vs. 12.7), suggesting they experience more regret regarding the RRT decision. A majority of participants with a history of pre-ESRD care also endorsed an active RRT decision-making preference on the Control Preferences Scale, compared to those without a history of care. Further, a majority of participants expressed a desire for kidney transplantation, however, knowledge of and referral for kidney transplant varied according to amount of pre-ESRD nephrology care. Notably, a small minority of participants without pre-ESRD care reported receiving information about living donor kidney transplant and none had been referred for kidney transplant.
*Conclusions: The qualitative and quantitative differences in RRT knowledge and decision-making according to amount of pre-ESRD care suggest further exploratory and targeted intervention research are necessary to ensure all patients receive timely treatment-related education.
To cite this abstract in AMA style:Urbanski M, Dumenci L, Gadegbeku C, Siminoff L, Waterman A, Gardiner H. “By the Time They Get to Me, I’ll Be Dead Anyway” – A Mixed-Methods Examination of Treatment Education & Decision-Making among Patients with Varying Amounts of Pre-End-Stage Renal Disease Nephrology Care [abstract]. Am J Transplant. 2020; 20 (suppl 3). https://atcmeetingabstracts.com/abstract/by-the-time-they-get-to-me-ill-be-dead-anyway-a-mixed-methods-examination-of-treatment-education-decision-making-among-patients-with-varying-amounts-of-pre-end-stage-renal-dis/. Accessed January 27, 2022.
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