Dr. Fiel: These questions are extremely important, and part of discussions that we as a care team have with our patients when they come for their visits. We realize that adherence is a major problem in CF care because of the complexity of all the treatment regimens, and it probably takes anywhere from close to an hour to two-plus hours to really do all of their appropriate treatments. And looking at the medical literature on adherence, [it has been reported] that patients adhere about 50% to maybe 60% at most in their care if you look at all of their treatment regimens.1
Narrator: Different factors impact adherence—ranging from patient’s age, mental health, quality of family relationships to access to care, work life, to peer support, among others. Furthermore, adherence is impacted by the fact that currently approved
As key steps in managing adherence, clinicians should assess adherence during each visit based on pharmacy records and patient reports, make an effort to accurately identify patients who are nonadherent, and explore ways to make interventions more practical for patients, as well as to families and care teams. Education alone may not be enough, and multicomponent interventions have been found to be best. They may include education, reminders,
Dr. Fiel: Basically, when our team meets with patients, we talk about negotiating care and trying to understand the obstacles for patients as to why they may or may not want to continue with their therapies. Cystic fibrosis is a disease where patients frequently don't feel remarkably better after taking their medications. It's not like asthma, where they will get a very significantly improvement in their air flow or their breathing, and these patients will frequently have cough and be congested most of the day, even with good pulmonary toilet. So we try to come up with approaches for them that would include exercise plans, keeping day planners to sort out which types of therapies work best, work around their school or jobs, try and have them discuss with their workplace or spouses or roommates ways to improve their adherence and maximize the efficiency of the kinds of things that they do. These discussions take place every time we meet with our patients, to see if there are different obstacles for them, so that they can have a very realistic goal in treatment.