A medication adherence program created by Cincinnati Children’s specifically for teens and young adults living with a kidney transplant reduced acute rejection rates by 50 percent and their associated costs, saving $9,106 per patient compared to routine care.

Some teens—even those who received their kidney transplant as a child—may begin to miss medications for a wide range of reasons. This can lead to loss of the transplanted organ, resulting in a return to kidney dialysis and a dramatically reduced life expectancy.

Physicians worked with experts in our Center for Adherence and Self-Management to build MAPS (the Medication Adherence Promotion System). The system provides teens and their families with personalized support so they can take charge of their health and avoid complications, says David Hooper, MD, MS, Medical Director of Kidney Transplantation.

Understanding Barriers to Taking Medication

One patient’s compelling story prompted Hooper and Charles Varnell Jr., MD, MS, Pediatric Nephrologist, to develop MAPS. The teen struggled to take his medications regularly and on time and needed lots of guidance.

Hooper worked with Varnell, Kristin Rich, PhD, Ahna Pai, PhD, and Avani Modi, PhD, from the Center for Adherence. They pulled together patients, parents, pharmacists and transplant coordinators to figure out how to reduce kidney transplant rejections in adolescent patients.

The team created an assessment for patients to fill out. The screening tool discovers barriers to taking medications that patients might not otherwise discuss with their care team. The most common barriers include:

• Forgetfulness or forgetting to take the medication
• Not liking the taste of the medication
• Problems with swallowing pills
• Being embarrassed to take medicine around friends
• Side effects of the medication
• Inability to afford the medication

Patients answer questions when they check in to the clinic. The care team partners with the patient to develop a personalized strategy to overcome their barriers. Each patient’s immunosuppression drug levels and rejection rates are tracked and monitored. If things get off track, the care team intervenes.

The costs of a poor transplant outcome are so high that even reducing rejection rates by as little as 3 percent can be worth the effort to achieve, Varnell says.

A Patient-driven Approach

Patient feedback refined early versions of MAPS.

“We found the right way to ask these questions and the right tools and words to use,” Varnell says. He programmed a best practice alert into EPIC to flag each patient’s listed barriers for physicians.

MAPS provides a tool for shared decision making. If patients say they forget to take their medicines, physicians help them identify barriers and then let them select from a variety of adherence options.

The system also provides insight into the patient/parent relationship when a patient and their parents fill out the form separately. For example, a parent might say their child refuses to take their medication, while the teen shares that they have trouble swallowing the meds and don’t want others to know. That creates an opportunity to intervene and get patients back on track, Hooper says.

Hooper and Varnell hope that the culmination of seven years of work and multiple publications provides medication adherence guidance for other providers caring for patients with chronic conditions. They’ve already shared results with Cincinnati Children’s colleagues in Diabetes, Liver Transplant and Rheumatology.

Their most recent publication on medication adherence can be found in the American Journal of Kidney Diseases.