Patient-Reported Outcomes Measured in the Nondialysis Population

As someone with kidney disease, I am always interested in seeing new approaches to maximizing the quality of patient visits with their clinicians. I commend the authors of “Real-World Experience with an Electronic Patient-Reported Outcome Measure (ePROM) in Care of Patients with Non-Dialysis-Dependent CKD,” for their efforts build on needs identified by international kidney guideline bodies and patients to create an ePROM for this patient population.1 With recent advances in technology, this may be an area where an ePROM can become a useful tool to enhance both the quality of the patient visit and the satisfaction of patients and clinicians. As part of being among the first to try this with a nondialysis population, the authors focused on identifying factors that influence the utilization of an ePROM using a study population that reflects a diverse CKD population. Of ePROM responders, 40% were of Black race, 47% had diabetes, and 38% had coronary artery disease, among other factors. Given the complex nature of kidney disease, this is an interesting and potentially impactful area. Although a survey should never take the place of meaningful interactions between patients and clinicians, the complexity of kidney disease and its impact on the patient and their family may not also lend itself to the time often allocated to a patient visit. A survey that can capture details of the patient's experience in a way that a clinician can quickly digest may be a useful clinical tool. The reported results from patients and clinicians show that although there is much potential for the ePROM, there is room for further refinement. Among patients, 48% agreed and 20% strongly agreed that if they answer the ePROM, their doctor will talk to them more about their symptoms. Although 71% of clinicians said discussing ePROM scores could result in better education of patients, only 6% strongly agreed. However, the study found significant barriers to survey adoption. Of 2458 patients who were sent an ePROM, 41% completed it at least once. The response rates were lower among older patients, Black and Hispanic individuals, and those from socioeconomically disadvantaged communities. Compounding the issue, only 30% percent of clinicians reported using the ePROM results in patient visits. The study highlights three key points. The ePROM was underutilized by both people with CKD and nephrology clinicians, there was both a perceived lack of disease specificity and uncertain impacts on patient care, and there are opportunities to better integrate the ePROM into clinic workflow and for greater support from clinicians. An ePROM that is more closely aligned with what is going on in a patient's life may drive increased adoption. At the same time, such data might help address issues that may drive interest in the ePROM from clinicians. The study identifies recommendations from patients and clinicians to increase the use of the ePROM including the use of reminders, revising the format and display, considering additional questions, encouraging clinicians to discuss results with patients, and increasing the support offered to clinicians. Each of these points sets the stage for further research to refine the ePROM and test develop one with higher adoption and impact on patient care. As also mentioned in the article, a next step in the evolution of creating an ePROM that is widely adopted by patients and their clinicians could be additional efforts to build an ePROM that is driven by patient and clinician inputs beyond those suggested in the article. The authors also note feedback from participants on the need for a survey that is more specific to the nondialysis kidney disease population. As a next step, opportunities ought to be explored for creating an ePROM that better captures the patient experience and drives clinician adoption and decision making. For instance, there could be different ePROMs for different kidney diseases and stages of kidney disease, and an ePROM could also have questions that focus more on typical symptoms and challenges for people with kidney disease. There is also likely to be significant avenues to drive increased adoption by better matching how the survey can be completed with how patients use technology. For instance, some patients may be more likely to complete the survey if it is text message based. Others through an email separate from the electronic health records. And others with something embedded within the electronic health record itself. With the advantage of recent advances in voice recognition, a short phone-based survey may become an option as well. Future versions of the study could also benefit from adopting some of the tools used by on-line marketers to optimize effectiveness. For example, the online marketing industry has used A/B testing for many years to test multiple versions of marketing campaigns and web pages to see which have higher adoption rates and using the data to further iterate toward maximum adoption. Perhaps this could be done with the ePROM as well to iterate and test ideas for driving higher adoption. The low utilization rate by clinicians can also be seen as an opportunity to create an ePROM that is more readily adopted by clinicians. For instance, an ePROM that is time efficient to review and provides additional insights that are not easily captured in a clinical visit or the existing electronic health record could be a useful tool. This might include ePROM trends over time, an automated analysis of the results, and flags for anything unusual. Looking further ahead, perhaps automated sentiment analysis can provide insight into the patient's mood ahead of the client visit. An ePROM that is easy to use, insightful, and quick to evaluate that leads to better patient outcomes and enhanced health care provider satisfaction could serve as a role model for many branches of medicine. Hopefully with a few more iterations of studies like this one, nephrology will have an ePROM tool that leads to higher usage, enhanced clinical outcomes, and higher patient and clinician satisfaction.