A new qualitative analysis from the OPTIMIZE-CKD study has revealed significant gaps in patient understanding of chronic kidney disease despite strong support for collaborative care approaches. The study, published in Kidney Medicine, examined patient perspectives on the Kidney Coordinated HeAlth Management Partnership (Kidney-CHAMP), a population health management intervention designed to optimize care for CKD patients in primary care settings.
Study Design and Patient Population
The ancillary study conducted semi-structured interviews with 45 patients randomized from the Kidney-CHAMP intervention group between May 2021 and February 2022. Participants had a mean age of 75 years, with 44% being women and 9% non-White. Notably, 59% had low socioeconomic status and 77% had a Charlson comorbidity index ≥8, indicating high disease burden.
The patient population reflected the complexity of CKD management, with universal hypertension (100%), diabetes in 73% of participants, and cardiovascular disease in 91%. The mean estimated glomerular filtration rate among participants was 38 mL/min/1.72 m², ranging from 19-61, indicating moderate to severe kidney dysfunction.
Intervention Components and Patient Response
The Kidney-CHAMP intervention combined three key elements: nephrology e-consults for primary care providers, pharmacist-led medication reconciliation, and standardized nurse-delivered CKD education sessions using National Kidney Foundation and CDC materials. All participants attended at least one nurse-led CKD education session delivered via telemedicine.
Patients demonstrated broad support for collaborative CKD comanagement, with many valuing nephrology input and citing specialist expertise. However, some expressed frustration with duplicative office visits, highlighting the need for better care coordination.
Educational Outcomes and Knowledge Gaps
Despite receiving standardized CKD education, the study revealed concerning gaps in patient understanding. "Although all patients had received standard CKD education, patients had varied levels of understanding about the role of kidneys and what CKD meant," the researchers reported.
Nearly one-third of patients were unable to explain the disease or its implications despite standardized nurse education. There was notable lack of awareness regarding the health impacts of CKD, including failure to recognize cardiovascular complications and incorrect attribution of symptoms like back pain or urinary frequency to CKD. Many patients did not associate cardiovascular disease risk with CKD, only being aware that it could result in needing dialysis or kidney transplant.
Self-Management Strategies and Limitations
Patients' self-management strategies were often limited to broad concepts such as reducing sodium intake and drinking more water. Avoidance of nephrotoxic medications was inconsistently recalled, though some reported counseling to discontinue NSAIDs. Importantly, patients who internalized the implications of CKD, such as progression to dialysis, expressed greater willingness to engage in lifestyle modification.
Patient Feedback on Education Sessions
Education sessions by nurse educators were widely well-received, especially when they helped patients manage anxiety and provided actionable guidance. While two-thirds of participants described the education as helpful, patients consistently requested more frequent and personalized sessions.
One participant explained the need for individualization: "It wasn't individualized enough… what I should be practicing or doing to try to prevent dialysis." Others highlighted the need for simple language, written materials, and concrete action plans: "…a list of things that you can do to improve, like, these are definite things that you have to do…like a shopping list."
Clinical Implications and Future Directions
The study's findings underscore the challenge of effective patient education in CKD management. Despite the benefits of Kidney-CHAMP, many patients continued to demonstrate limited or inaccurate understanding of CKD. The authors noted that "more effective approaches to communicating risk of CKD development and progression are needed."
Future recommendations include organizing CKD education into a series to reinforce key take-home points, diversify lessons, and enable participants to problem-solve and share experiences with other people living with CKD. The study suggests that more personalized, frequent educational interventions may be necessary to improve patient understanding and self-management capabilities.
Study Context and Limitations
CKD affects approximately 14% of US adults over age 30, with most patients with nondialysis-dependent disease managed by primary care providers who may lack specialized training, time, or resources for optimal care. These gaps can accelerate CKD progression and lead to complications such as unplanned dialysis starts.
The study's limitations included low representation of non-White individuals, recall bias, difficulty separating pre-existing knowledge from education gained during the intervention, and the absence of validated measures for health literacy, patient knowledge, and activation.
