Study finds improvements in kidney failure patient education are critically necessary
Presentations focused on educating patients about their kidney failure options required better practices to improve content gaps, health literacy and patient communication with nephrologists, according to a study.
“Limited health literacy, common among older adults with [chronic kidney disease] CKD, can be a barrier to patient education and makes supporting shared decision-making difficult,” Susan Koch-Weser, ScD, of the department of public health and community medicine at Tufts University School of Medicine, and colleagues wrote. “Limited health literacy is associated with higher mortality and worse patient-reported outcomes, including fewer self-care behaviors among dialysis patients.”
In this mixed-methods design study with qualitative and quantitative analysis, Koch-Weser and colleagues collected data by observing nine education sessions, five semi-structured interviews with educators and 133 educational slide presentations held at four different sites in the United States. The sessions included group and individual classes about kidney failure. Researchers based their analyses on the following themes informed by the Ottawa Shared Decision-making Framework: variation in education sessions, referrals and patient engagement; program content and gaps; and literacy burden.
The analysis revealed wide variations in development, quality and accuracy of educational materials available to participants. Educators emphasized dialysis and in-center hemodialysis with little mention of conservative management, according to Koch-Weser and colleagues. Interviews with educators revealed patients were often referred too late to education sessions. Also, investigators noted some patients were “overwhelmed” while learning the implications of kidney failure in a group setting.
Sessions were usually generalized and did not provide opportunities for tailored information. Few nephrologists were involved in education sessions or aware of the educational content, the researchers discovered. Sessions seldom went in depth on prognosis, decision support, mental health and cognition, advanced care planning, cost or diet related to CKD. Slide presentations used during sessions also did not consistently implement best health literacy practices.
“Although education for patients with kidney failure is a critical component of patient-centered care and shared decision-making, kidney failure treatment options were not presented neutrally and there was limited discussion of prognosis or conservative management in this study of education programs,” the researchers wrote. “Explicit national content guidelines could help ensure that all treatment options and decision-points are clear and accessible to patients. Greater involvement by nephrologists to engage patients in shared decision-making both before and after educations sessions, track referrals and attendance, and oversee systematic process for reviewing and updating educational materials would also help ensure accuracy and improve shared decision-making opportunities for patients with advanced CKD.”