Lack of adherence to medication regimens is common among teenage kidney transplant recipients. Forty percent are believed to not take medications as prescribed, and adolescents with kidney transplants are at higher risk for rejecting their kidneys and have far worse outcomes than any other age group. In January 2015, the Cincinnati Children’s Department of Pediatrics, Integrated Solid Organ Transplant Program, Adherence Center and Information Services began a collaborative effort to develop new tools that are changing outcomes for our kidney transplant patients.

We now have a system that routinely screens for barriers to taking medications, right in our nephrology clinic. Patients fill out a checklist of fourteen possible barriers to adherence, such as variable weekend schedules, peer pressure, bad-tasting medications, or financial or transportation problems obtaining medications. For each possible barrier, there is a patient-centered, shared decision-making tool with options to help the patient overcome their identified barriers.

In addition, each clinic visit includes a review of the patient’s medication-taking behavior. Real-time monitoring via pill boxes that send cell signals when opened adds objectivity to these discussions and allows us to detect temporal patterns of low adherence. Through experience, we have learned that simply focusing on specific patient behaviors isn’t enough. We have had to change the culture of how providers talk to these patients. In the past, doctors and patients did not have the vocabulary to address “under-reporting” in neutral language. Our staff is trained to ask non-threatening questions, in effect giving permission for teens to talk about what is getting in the way of taking their medicine. We are then able to explore the reasons together and come up with sensible solutions.

Using this integrated system that identifies at-risk patients and their barriers, and allows for intervention based on patient preferences, we have significantly decreased rejection episodes. Over the summer months of 2016, we have achieved a stretch of active patient days without rejection that is nearly twice as long as our previous best, three years ago. In effect, we prevented eight expected rejection episodes over a four-month period. This has saved our patients the ill effects of treating rejection and the short- and long-term decline in kidney function that is associated with such rejections. It has also translated into hundreds of thousands of dollars saved in hospital billing. Our current focus is on sustaining this trend.