Key Points:
This largest to date patient survey study explores what patients with kidney disease want to know about treatments, such as dialysis or conservative management.
A surprising number of patients want extensive doctor-like education, but are willing to spend only several hours on education.
Patients are notably open to online and digital educational modalities—technology may allow for individualized and ongoing patient education.
Background: Despite efforts to educate individuals with CKD and thereby improve outcomes, studies have shown that a significant number of patients still report poor CKD knowledge. Thus, understanding patient needs and preferences is crucial for the development and implementation of an effective CKD educational program.
Methods: A paper survey was distributed to patients with CKD 21 years and older at a tertiary care hospital's outpatient nephrology clinic in Rochester, NY. Data on patient demographics; print and technological literacies; and preferences regarding topics, instructors, class formats, session frequency, duration, and peer support were gathered.
Results: The mean age of 337 patients was 65 years (±12.33 years), and the self-identified races were American Indian or Alaska Native (<1%), Asian (3%), Black (12.17%), Native Hawaiian or other Pacific Islander (<1%), White (83%), and Other (2%). Most of the patients (69%) never needed help with health instructions, and 68% of patients used a smartphone or computer every day. Key topics identified by patients included the definitions of CKD, creatinine, and GFR and information on kidney diet. Seventy-three percent of patients desired more than basic CKD information, with one in five even wanting to know everything a doctor knows. Forty-six percent were willing to attend classes, and 33% preferred using digital (video, computer, or smartphone) modalities. Patients were willing to attend an average of 3.6 classes, and most preferred hour-long classes. Most of the patients (46%) preferred a doctor as the educator, and 53% expressed interest in connecting with fellow patients for peer support.
Conclusions: Most patients with CKD are interested in comprehensive education about their disease. This research may offer insights into the optimal content and delivery of CKD educational programs by elaborating on patients' needs and the integration of online modalities to deliver content. Future person-centered educational programs for people with CKD are needed.