Researchers at the Jacobs School of Medicine and Biomedical Sciences find that mental health screenings are an important part of cystic fibrosis (CF) patients and their caregivers.
Cystic fibrosis is a progressive genetic disease that causes persistent lung infections and affects most basic physical processes. While recent breakthroughs have dramatically extended the lifespan of CF patients, the disease presents patients and their caregivers with significant and ongoing daily challenges.
Illness has a mental impact on patients and caregivers
The primary goal of CF clinics is to treat physical illness, but providers are well aware of the mental burden this places on patients and caregivers.
“It can be difficult for people with cystic fibrosis and their families to continue with daily therapy and live with a life-limiting disease,” says Danielle M. Goetz, MD, Clinical Associate Professor of Pediatrics and Director of the Center from Western New York Cystic Fibrosis at UBMD Pediatrics and Oishei Children’s Hospital. “Our team began to think of mental health screening as an important part of care.”
The Jacobs School / Oishei team effort was led by Goetz and Carla A. Frederick, MD, associate professor of medicine, with guidance from Drucy S. Borowitz, MD, clinical professor emeritus of pediatrics, and Beth A. Smith, MD, professor of psychiatry and pediatrics.
Depression linked to poorer health outcomes
In 2013, Buffalo researchers began to systematically use effective tools for screening for anxiety and depression in patients and their caregivers, both of whom have higher rates of these conditions than the general population.
The researchers also developed an algorithm to determine what kind of treatment would be needed.
The screening process was shared with other centers and was piloted in a larger CF center at Ann and Robert H. Lurie Children’s Hospital in Chicago.
These tools and the research on which they are based are described in an article published in May in the British Medical Journal Open Quality.
“Cystic fibrosis is a disease that affects the whole body, including the ability to breathe and digest food,” says 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 a feeling of isolation. “
The disease can also cause diabetes and liver problems.
“It’s a lot to think about and deal with,” Goetz says, adding that previous studies have shown that depression in patients with cystic fibrosis is linked to poorer health outcomes, including decreased function. pulmonary, lower body mass index and increased exacerbations and hospitalizations.
Restrictions can lead to a feeling of isolation
Due to the serious risk of transmitting infections, people with cystic fibrosis are also not supposed to get together, as shown in the book and the adapted Hollywood film “Five Feet Apart”, which tells the story of a story. love between two adolescents with cystic fibrosis.
In fact, CF patients are advised to stay six feet from each other (even before the COVID-19 pandemic), a restriction 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 intimately involved in their care.
“Being a parent is difficult, and raising a child who has multiple medical and perhaps social needs is a challenge,” Goetz explains. “It makes sense that depression and anxiety are more common among these parents and caregivers. and helping their child get through multiple stressors is painful. ”
“We support parents and caregivers, often talking to them about how they are dealing with their child’s or loved one’s illness and how we can help them seek help when needed.”
Questionnaires used with clinical assessments
In 2013, the center began assessing depression in all of its 180 pediatric and adult patients with cystic fibrosis. The center now screens between 95 and 99 percent of patients and caregivers.
The first step was a simple screening questionnaire (the Patient Health Questionnaire-2, or PHQ-2), which asks to what extent the individual suffered from depression or anhedonia (lack of enjoyment in the activities that the patient had used to find pleasant).
A positive response to either question triggers a more detailed questionnaire (Patient Health Questionnaire-9 or PHQ-9) or Generalized Anxiety Disorder Questionnaire-7 (GAD-7), which the center is now using it as initial screening tools.
With these questionnaires, as well as clinical evaluations, the center assesses patients as suffering from mild, moderate, moderately severe or severe depression or anxiety.
Patients are then referred to mental health specialists or treated at the CF center by its own mental health coordinator. They receive follow-up evaluations to determine the effectiveness of the treatment.
Suicidal ideation included in the selection process
Researchers reported a higher prevalence of depression and anxiety in the CF center than has been reported in the literature.
They also found that 5 to 10 percent of patients and caregivers had thought about suicide. The researchers made the decision to include suicidal ideation in the screening process, and all clinic staff were trained to assess this.
“We saw it that way,” Goetz says. “If we choose not to screen for suicidal ideation, it just means that we can miss it, not that suicidal ideation is not happening. It’s a difficult thing to track down, however, if you don’t know what to do with a positive screen.
“It is therefore important that the whole team understand how to screen and how to make an emergency plan with the patients,” she adds. “Everyone on the team can learn, especially nurses and providers, but really everyone, in case there isn’t a social worker or psychologist on the team.”
The centre’s emergency plans are tailored to each patient and may involve the development of a suicide risk management plan, i.e., a ‘safety net’ for the patient, or an urgent or emerging referral to a patient. mental health professional.
Goetz explains that the step-by-step process, starting with the short questionnaire, allows for rapid screening for all people with cystic fibrosis and their caregivers.
“A provider can then focus on what needs to be done for each patient, focusing on those who need more interventions,” she says.
“It has been very important to have a social worker and a psychologist in our clinic who can help providers provide the best mental health care or the best referrals for care,” Goetz adds. “I can’t say enough good things about this integrative approach and the importance of mental health and its impact on physical health.
Key role in quality improvement efforts
The CF Care Center teams also include nutritionists, respiratory therapists, nurse coordinators and research coordinators, all of whom play a vital role in quality improvement efforts.
The toolkit and related resources have now been posted on an international mailing list for CF mental health and medical providers.
The WNY CF Center at UB and Oishei Children’s Hospital, a CF Foundation accredited center that treats patients from eight counties, have been involved in the CF Foundation Quality Improvement Network.
Goetz notes that the mental health screening project demonstrates a key premise of the quality improvement effort.
“We now know that people with cystic fibrosis should be involved in our projects from their inception,” Goetz says. “This is a great goal for any team looking to improve clinical care: the people who know best how to improve the disease assessment and management process are probably the people living with the disease. “
Other co-authors come from the Jacobs school
Along with Goetz, Frederick, Borowitz and Smith, other Jacobs School co-authors are:
Adrienne Savant, MD, of the Ann and Robert H. Lurie Children’s Hospital in Chicago, is also a co-author.
The research was funded by Cystic Fibrosis Foundation Therapeutics, which is part of the Cystic Fibrosis Foundation.