Understanding how patient education affects the process of treatment decision-making: Cultural model change in kidney...

Chronic kidney disease affects 1 in 7 people in the US, and 1 in 6 US Veterans. Treatment for kidney failure includes home dialysis, which, despite its benefits, is infrequently used. A major barrier to using home dialysis is receiving adequate education about it. This research investigates how patient education affects treatment choices of Veterans with kidney disease.

As part of a randomized control trial, we interviewed 42 US Veterans with advanced chronic kidney disease. An interview based on the Theoretical Domains Framework elicited on the impact of study education on decision-making. Reflexive thematic analysis attuned to cultural model theory-the beliefs which motivate behavior held by groups-was used for analysis.

There were four themes in the data: 1) Pre-education, patients had a lack of knowledge of kidney disease and treatment. 2) After education, patients reacted with surprise and then coping actions. 3) Patients experienced positive emotions and beliefs from education and coping. 4) Patients dealt with diagnosis and engaged in treatment decision-making. Ten cognitive, emotional, and behavioral subthemes were seen. Themes were found in the interviews of 76 % of participants receiving comprehensive patient education, but only 27 % of those receiving enhanced usual care.

We provide a mechanistic understanding of the process through which education affects cultural models to support patients' decision-making by preparing and equipping them to confront the future. We note that cultural model changes occur across longitudinal stages, which are recursive with one another and dynamic based on the individual case.

Because optimal dialysis outcomes require time to plan, create, and heal from dialysis access surgery, practitioners should provide patient education 6 months prior to estimated start to account for time needed for cultural model change. Helping patients know what to expect in terms of their own changing understanding may further support.