1 University of Rochester Medial Center (UNITED STATES)
2 University of Cinncinnati (UNITED STATES)
About this paper:
Appears in: INTED2019 Proceedings
Publication year: 2019
Page: 8643 (abstract only)
ISBN: 978-84-09-08619-1
ISSN: 2340-1079
doi: 10.21125/inted.2019.2156
Conference name: 13th International Technology, Education and Development Conference
Dates: 11-13 March, 2019
Location: Valencia, Spain
Though awareness is lacking, chronic kidney disease is extremely common. In the US alone, some 30 million adults have chronic kidney disease, and 700,000 of those have end-stage or advanced kidney disease. There are three basic treatments for end-stage kidney disease: kidney transplant, dialysis, and conservative management (or management of symptoms without dialysis). Kidney transplants, though publically hailed as miracles, are not an option for older adults who also have other severe health conditions. Dialysis may statistically prolong life for the very elderly and sick; dialysis also has a severe symptom burden – and in fact, many patients often regret their decision to start dialysis. On the other hand, conservative management, which focuses on symptom management and quality of life, can be a viable option for older, frail patients. In the United States, given the complexity of treatment choices, both the Renal Physicians Association and the American Society of Nephrology have identified that patient education and shared decision making are crucial elements of patient-centered care. Yet, patient education and shared decision-making are often lacking or ineffective in dialysis decision-making. For instance, although most patients want to know their prognosis, many patients have a poor understanding of their prognosis and rate prognostic conversations with their physicians as poor. Patients also do not understand their options; even though conservative management in older adults provides a much higher quality of life than dialysis and may have a life expectancy not tremendously less than that of dialysis. In one study, only 1% of patients recalled having discussions about conservative approach as even an option.

We assert that better patient education is possible and truly needed; US physicians may consider looking to other countries such as Canada or Australia where more patients are offered, and in fact, then choose, conservative management over dialysis. This presentation will detail a palliative care-based shared decision-making intervention and discuss how and why patients make decisions for dialysis or conservative management. The decision-making intervention involves providing patients with a question prompt list, a dialysis education booklet, and up to 3 personalized coaching sessions. While dialysis decision making is a clinical problem, the educational framework is important in our work. Specifically, in framing the research, we look to a socio-ecological framework to understand the challenges of patient-education; specifically, the intervention was tailored to meet the literacy and socio-economic challenges of diverse patient populations.

Given the significance of dialysis education at an international level, this presentation aims to engage an international audience about innovations in education that can better patient outcomes and aid patients in making the most optimal kidney disease treatment decision in line with their own goals and wishes.
Dialysis education, dialysis decision-making, educational intervention.