Project Helps Cystic Fibrosis Patients Get Mental Health Help

Marianne McClain, PsyD, and Laura Schopp, PhD
Marianne McClain, PsyD, and Laura Schopp, PhD, of the MU School of Health Professions held workshops to teach about 120 behavioral health care professionals how to help patients with cystic fibrosis.

In June 2017, University of Missouri School of Health Professions and School of Medicine faculty were awarded a grant from the Cystic Fibrosis Foundation for a project that provides mental health services to adults with cystic fibrosis (CF).

Through this collaboration, a network of about 120 Missouri behavioral health care providers learned more about the disease.

Cystic fibrosis is a progressive, genetic disease for which there is no cure. It causes persistent lung infections and limits the ability to breathe. These chronic symptoms come with hospitalizations and rigorous treatment plans that make it hard to complete school or hold down a job with regular hours. The Cystic Fibrosis Foundation estimates 40 percent of people with CF have secondary symptoms, such as anxiety and depression.

“If you can’t breathe, that’s pretty stressful, and there are other associated challenges in people with CF,” said Laura Schopp, PhD, the chair of the School of Health Professions’ Health Psychology Department. “For example, males with CF are infertile, and CF patients who have received lung transplants are on immunosuppressants, which can make things like flu season especially complex if accommodations need to be made at work or school. So anxiety and depression among this population are relatively high. Yet there are very few mental health providers who are well-versed in CF.”

Melissa Kouba, MD, former director of MU Health Care’s Cystic Fibrosis Center, had already added a social worker to the care team she oversaw to screen every CF patient at the center for anxiety and depression.

“Our patients are very medicalized already,” Kouba said. “They have to do breathing treatments for a minimum of 45 minutes twice a day, up to four times a day. They must learn how to clean, manage and travel with their equipment, and most patients take many pills several times a day. So asking them to add another appointment to their already busy schedules to discuss management of life with a mental health professional isn’t ideal, especially if this professional doesn’t know about CF and they have to spend time explaining their disease to them.”

Geography is another obstacle. There are only three CF centers in Missouri — MU Health Care’s Cystic Fibrosis Center and facilities in Kansas City and St. Louis. Because of its location, Columbia’s center sees patients from rural areas all over the state.

Through the efforts of MU faculty collaborators funded by this grant, physicians at the CF centers now have a referral list of psychologists, social workers, psychiatrists and nursing professionals located all over Missouri who can help patients locally so they don’t have to travel long distances for their mental health appointments in addition to their physical ones.

“We saw a need to train mental health providers who were already a part of these rural communities in the specific needs of CF patients,” Schopp said. “What’s unique about this grant is we were able to build in sustainability and accessibility. Now a local person is prepared to support a patient’s mental health needs, rather than someone who would be assigned to that area with grant dollars and then have to leave when the grant funding ran out. We wanted to create a team of people with those skills so that we can provide access today and access tomorrow.”

After receiving the grant, Schopp and Marianne McClain, PsyD, a postdoctoral fellow in the Department of Health Psychology, spent about six months shadowing Kouba to learn more about the disease. Next, Schopp and McClain developed a four-hour workshop designed for mental health professionals they presented at federally qualified health centers throughout the state.

In addition to mental health professionals, several nurse care managers attended the workshops. Nurse care managers are often the health professionals closest to CF patients, as they facilitate care among pulmonology, nutrition, respiratory therapy and physical therapy appointments and seek out mental health treatment where they can.

“We got a lot of feedback from the nurse care managers that the workshops were very valuable to them, and not just in learning more about the mental health needs of CF patients, but also brief intervention strategies that they could perform themselves,” McClain said.

For instance, CF patients often experience a dyspnea-anxiety-dyspnea cycle. This happens when shortness of breath causes anxiety, which can lead to further shortness of breath. This can spiral out of control. Nurse care managers learned breathing tactics at the workshops to help their patients right then and there.

Armed with more knowledge about the challenges cystic fibrosis patients face, health professionals across the state can better serve their needs.

“The response from providers has been great,” Schopp said. “We’ve been really pleased with the response from the mental health community. We’ve had enormous support and enthusiasm for learning about the particular needs of those with CF.”

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