Cystic Fibrosis Foundation - Click here for homepage
Stay Informed  |  Volunteer  |  Clinical Trials

Connections

Quick Links

Find a Chapter

Bookmark and Share   Print  
July 2010

Be a Care Team Player! - Connections - July 2010 - Cystic Fibrosis Foundation
Dr. Cori Daines advocates
a “team care” approach to helping people with CF manage the disease.

Be a Care Team Player!

People living with cystic fibrosis and their families often ask: How do I get the best CF care?

The answer, according to Dr. Cori Daines, co-director of the Tucson, Ariz., CF center and an Associate Professor of Pulmonology at the University of Arizona College of Medicine, is teamwork.

Dr. Daines has worked with people with CF for the past 14 years. Here, she explains how teamwork and patient/family daily management have changed CF care for the better and what you can do to get the most out of your care.

What is the goal of team care and how does it work?

First, it is important that people with CF and their families consider themselves part of the care team. Rather than passively receiving treatment, people take an active role in their treatment. When this happens, health care providers are better able to help people with CF achieve their individual goals. The key is knowing what those goals are, so we can help find all the resources available to them.

How does a patient become more involved in managing his or her own care?

It starts with a visit to the CF care center. When people with CF come into a clinic, we have a discussion about how they’re doing and where they are with their health and life goals. Then I might suggest areas of their care that we could work on. I ask them what areas of their care make them unhappy. Patients benefit most if they communicate openly with their caregivers and tell us what works and what doesn’t.

Can you give us some specific examples?

When you ask people with CF what their goals are, you get a wide variety of answers — anything from gaining five pounds to going back to college. Patients might not know about all of the ways I can support them. For instance, they might not know I can provide them with an appetite stimulant to help them with their weight gain. They might not know about scholarships that are available to help them finance school or resources for fertility issues.

How early can children with CF become involved with their care?

I believe that starting from birth, children are developing into the adults they’re going to be. It’s important that I communicate not only with the parent, but with the child, too. Even when a child is only 5 or 6 years old, I ask them what medicines they’re taking. I ask them what they do to take care of themselves. As simple as this sounds, if children start practicing talking with their doctor and other CF health care providers early on, they become involved in their care at an early age — and that can make the daily management of CF easier because they know they have resources to help.

What are the benefits of being involved in your own care?

People who are involved in their care are better able to provide us with the information we need to make the best treatment decisions or recommendations. People who are engaged in their health can tell me that they’re suddenly more tired or not sleeping as well or they just don’t feel quite right. They’re able to give me better feedback than the ones who’ve not started the process, and that communication can make a difference in their health.

Several years ago, the Foundation made data about every care center available to the public. How does that help?

For people with CF and their families, seeing care center data encourages involvement in their center’s quality improvement. Patients ask us questions about how we can improve. We tell them that although we may not be performing well in a certain area, there are high-performing centers out there, and we’re going to do what they’re doing. It helps them understand why we’re making the changes we’re making in our center. Understanding this makes them more supportive of our quality improvement effort.

How has team care affected other aspects of your practice?

I find as I go back into my world as a pediatric pulmonologist and present our center’s data back to the pediatrics department and hospital, everyone says, “Wow. Look what you’ve been able to do with quality improvements.” It’s really important to me as a physician that CF caregivers can be leaders in team care as that practice spreads across medicine. We have so many lessons to teach other people, other diseases and other disciplines.

Additional Resources

  • Learn more about the Foundation’s efforts to help people with CF, their families and care centers become successful partners in improving the quality of CF care.

back to top

The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.