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 are trained in CF cultural competency and adult CF issues.
Cystic fibrosis is a progressive, genetic disease for which there is no cure. It causes persistent lung infections and limits the ability to breathe over time. These chronic symptoms come with hospitalizations and rigorous treatment plans that can make it hard to complete school or hold down a job with regular hours. The Cystic Fibrosis Foundation estimates about 40 percent of people with CF have secondary symptoms as a result of their disease, 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, 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 is 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 as a result of the national CF Foundation’s awareness and extensive commitment to comprehensive care. As a result of a special mental health committee’s findings, which demonstrated a significant need in mental health care in the CF population, an initiative to address this need was proposed. A social worker was trained to screen every CF patient at the center for anxiety and depression. But often the mental-health management had come to a roadblock at this point.
“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 4 times a day. In addition, they must learn how to clean, manage and travel with their equipment, and most patients take many pills (often 10 or more at a time) 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.
“Patients with CF are much more likely to go to other primary care providers if those providers are actually trained in CF and are aware of what a CF patient goes through on a daily basis.”
Geography is an obstacle, as well. Cystic fibrosis patients should have a team of care providers through an accredited CF center that regularly helps them with their physical needs. This includes providers expert in CF care with expertise in pulmonary disease, nutrition, physical therapy and activity and special respiratory therapies. 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, the Columbia’s center sees patients from rural areas all over the state, with patients and their families driving from even farther than Springfield.
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, its symptoms and its rigorous treatment strategies. Next, Schopp and McClain developed a four-hour workshop designed for mental health professionals that they presented at various Federally Qualified Health Centers throughout the state.
“It was an excellent training program,” said Neuropsychologist Dr. Dale Halfaker who attended a workshop in Springfield, “To me, collaborative care is important because no one specific discipline has the training to encompass the total care of the individual. With well trained, knowledgeable professionals working together the total care of the patient is improved.”
Dr. William Mallot echoed Halfaker’s sentiments: “I greatly enjoyed the workshop and the ability to learn more about CF. The training reinforced the notion that we as providers need to communicate with each other on a regular basis.”
In addition to mental health professionals, several nurse care managers attended the workshops. Nurse care managers are often the health professionals who are closest to people with CF, as they are facilitating care and time spent between pulmonology, nutrition, respiratory therapy and physical therapy, as well as seeking out mental health treatment for their patients 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, those with chronic respiratory conditions often experience what is called an dyspnea-anxiety-dyspnea cycle. This happens when shortness of breath causes anxiety, which can lead to further shortness of breath as a symptom of the anxious feelings. This can spiral out of control, but there are breathing tactics that nurse care managers learned 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.”
This article was republished in the Spring 2019 issue of MU Health Magazine.