Physicians from UB and Oishei Children’s Hospital in Buffalo have implemented a mental health screening tool for cystic fibrosis patients and their caregivers
BUFFALO, NY – Cystic fibrosis is a genetic, progressive disease that causes persistent lung infections and affects the most basic physical processes. While recent breakthroughs have significantly extended the lifespan of patients with CF, the disease presents patients and their caregivers with significant lifelong daily challenges.
The primary purpose of cystic fibrosis clinics is to treat the physical illness, but caregivers are well aware of the mental toll it takes on patients and caregivers.
“It can be challenging for people with CF and their families to maintain daily therapies and live with a life-limiting disease,” says Danielle M. Goetz, MD, director of Western New York’s Cystic Fibrosis Center at Oishei Children’s Center. Hospital and clinical associate professor of pediatrics at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo. “Our team began to feel that mental health screening was an important part of care to look at.”
The Jacobs School/Oishei team effort was led by Goetz and Carla A. Frederick, MD, associate professor of medicine, with guidance from Drucy Borowitz, MD, professor emeritus of pediatrics, and Beth Smith, MD, professor of psychiatry and pediatrics.
In 2013, the Buffalo researchers began to systematically use efficient tools to screen for anxiety and depression in patients and their caregivers, both of whom exhibit higher rates of these conditions than the general population. The researchers also developed an algorithm to determine what type of treatment would be needed.
The screening process has been shared with other centers and was tested in a larger CF center at Ann and Robert H. Lurie Children’s Hospital in Chicago.
These tools and the research on which it is based are described in an article published last month in the British Medical Journal Open Quality.
“CF is a disease that affects the entire body, including the ability to breathe and digest food,” explains Goetz, who is also a pediatric pulmonologist at UBMD Pediatrics. “The burden of taking two to three hours a day to clear the airways of mucus and taking multiple medications can be so difficult and cause feelings of isolation.” The disease can also cause diabetes and liver problems.
Impact on health outcomes
“It’s a lot to think about and tackle,” Goetz said, adding that previous studies have shown that depression in CF patients is associated with worse health outcomes, including decreased lung function, a lower body mass index, and more exacerbations. and hospital admissions.
Because of the high risk of passing infections to each other, people with CF are also not meant to get together, as depicted in the book and Hollywood adaptation “Five Feet Apart,” which tells the story of a romance between two teenagers. with CF. In reality, CF patients are advised to stay six feet apart (even before the COVID-19 pandemic), a limitation that in itself can lead to feelings of isolation and depression.
At the same time, since most CF patients are diagnosed as young children, parents or caregivers of CF patients are closely involved in their care.
“Parenting is difficult, and raising a child with multiple medical and perhaps social needs is challenging,” Goetz says. “It makes sense that depression and anxiety are more common in these parents and caregivers. It is painful to watch and help their child go through multiple stressors. We support the parents and carers, often talking to them about how they are coping with the illness of their child or loved one and how we can help them to seek help when needed.”
In 2013, the center began evaluating all of its 180 pediatric and adult CF patients for depression. The center now screens between 95% and 99% of patients and caregivers.
The first step was a simple screening questionnaire (the Patient Health Questionnaire-2, or PHQ-2), which asks about the degree to which the individual has experienced depression or anhedonia (lack of pleasure in activities that the patient found enjoyable).
A positive answer to both questions leads to a more detailed questionnaire (the Patient Health Questionnaire-9 or PHQ-9) or Generalized Anxiety Disorder-7 (GAD-7) questionnaire, which the center now uses as the initial screening tools. Using these questionnaires, along with clinical assessments, the center rates patients as mild, moderate, moderate, or severe depression or anxiety. Patients are then referred to a GGZ specialist or treated in the CF center by their own GGZ coordinator. They receive follow-up assessments to determine the effectiveness of the treatment.
The researchers reported a higher prevalence of both depression and anxiety in the CF center than reported in the literature.
They also found that 5-10% of patients and caregivers had thought about suicide. The researchers had made the decision to include suicidal thoughts in the screening process and all clinic staff were trained to assess this.
“We looked at it this way,” Goetz said. “If we choose not to screen for suicidal ideation, it only means that we might miss it, not that suicidal ideation doesn’t occur. However, it is challenging to screen for if you don’t know what to do with a positive screening. so it is important that the whole team understands how to do the screening and how to create an emergency plan with patients.Everyone on the team can learn, especially nurses and caregivers, but really everyone, just in case there is no social worker or psychologist in the team.”
The center’s emergency plans are tailor-made for each patient and may include the development of a suicide risk management plan, ie a “safety net” for the patient, or an urgent or urgent referral to a mental health professional.
Goetz explained that starting with the short questionnaire, the step-by-step process allows rapid screening for all people with CF and their caregivers.
“A health care provider can then tailor what needs to be done for each patient, with a focus on those who need more interventions,” she said.
“It was so meaningful to have a social worker and psychologist in our clinic who can assist the caregivers in providing the best mental health care or referrals for care,” she added. “I can’t say enough good things about this integrative approach and the importance of mental health and its impact on physical health.”
CF Care Center teams also include nutritionists, respiratory therapists, nurse coordinators, and research coordinators, all of which play a vital role in quality improvement efforts.
The toolkit and related resources are now distributed on an international list for CF mental health and medical professionals.
WNY’s CF Center at UB and Oishei Children’s Hospital, a Cystic Fibrosis Foundation accredited center that treats patients from eight provinces, has been involved in the CF Foundation’s Quality Improvement Network. Goetz noted that the mental health screening project demonstrates an important premise of quality improvement efforts.
“We now know that people with CF should be involved in our projects from the start,” says Goetz. “That’s an excellent goal for all teams looking to improve clinical care. The people who know best how to improve the disease assessment and management process are likely to be the people living with the disease.”
Along with Goetz, Frederick, Borowitz, and Smith, other UB co-authors are Christine Roach and Nicole Shea of the Department of Pediatrics, Lynne Fries of the Department of Medicine, and Alex Cogswell of the Department of Psychiatry, all of the Jacobs School. Adrienne Savant of the Ann and Robert H. Lurie Children’s Hospital is also a co-author.
The research was funded by Cystic Fibrosis Foundation Therapeutics, part of the Cystic Fibrosis Foundation.