Study Measures Adherence to Improve Outcomes for Chronic Kidney Disease Patients

“We want to have better ways to figure out who is non-adherent so we can focus our efforts better on those patients who may require more assistance or specific resources to improve adherence.” – Cozumel Pruette

Non-adherence basically means not following all of the instructions given to you by your doctor. Adherence to treatment is something that’s definitely easier for some patients than others. For those living with rare or chronic conditions, it’s often a true struggle. For people whose quality of life is already significantly impacted by their diagnosis, following a complicated and tedious treatment plan can just seem like too much- even if you know it’s designed to help you.

Not only does non-adherence provide poor outcomes for patients, it costs the U.S. healthcare system billions.

One of the patient populations who struggles a great deal with adherence are those suffering from chronic kidney disease (CKD). To determine ways to improve adherence and ultimately patient outcomes, researchers at Johns Hopkins University conducted a study examining the issue. 

Ultimately, they understood that before we can combat adherence, we have to understand who it is that is non-adherent. Right now, that is usually measured simply by predictions from health care providers. So researchers set about to find more surefire ways to measure adherence.

The Study

Researchers used a group of young chronic kidney disease patients for their analysis. Their goal was to determine which patients were non-adherent by utilizing information gathered from both health care providers and technology.

87 patients age 11 to 19 were enrolled in the study. These individuals all had diagnoses of CKD or end-stage renal disease. These patients attended one of the same three medical centers and saw one of 17 medical providers participating in the research. Adherence was measured using reports from these providers, caregiver reports, patient reports, pharmacy refill data, and electronic pill boxes (which provide day-to-day data each time the box is opened by the patient).

What is interesting is that in this study the electronic pill boxes and the medical providers documented the same percentage of patients as being non-adherent (34.5%). However, they differed in which patients they classified as such. Reports from patients and caregivers as well as the data from pharmacies also showed a similar percentage (between 50-61%).

From this study, researchers concluded that, at least for this population of patients, the most accurate adherence measure comes from a combination of pharmacy refill data and provider reports.

These results are actually quite positive because providers already complete these assessments and accessing pharmacy data is not a complicated feat for most healthcare centers. This means that collecting adherence data will be feasible for most providers.

The results of this study were published here in Pediatric Nephrology.

Looking forward

The hope is that this information will not only help to track non-adherence in chronic kidney disease patients, but will also do the same for those suffering from a variety of other diagnoses.

Ultimately, researchers say they can’t conclude whether or not these exact methods would work best for other patient populations, but they can predict that a multimodal approach will provide the most accurate data regardless of disease.

This research is so important because there are steps that can be taken to improve adherence. However, we first have to know which patients need these additional resources. Hopefully by better identifying non-adherence, we will be able to improve outcomes for all patients.

You can read more this study here.


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