A University at Buffalo psychiatrist who played a key role in bringing mental health screening and treatment into the routine care of adults and youth with cystic fibrosis (CF) has been awarded $3 million from at the Cystic Fibrosis Foundation to focus on children’s mental health. with this disease.
Led by UB and launched this summer, the new study is the culmination of The International Depression Epidemiological Study (TIDES), which began in 2014 and was the largest study of mental health in young people and adults with CF. Thanks to TIDES, annual screening for depression and anxiety is now part of routine CF care for nearly 90% of adults and youth with CF in the United States.
“That’s the goal of this new study, which we call TIDES 2.0,” says Beth A. Smith, MD, principal investigator, interim chair of psychiatry at the Jacobs School of Medicine and Biomedical Sciences at UB, medical director of Child Psychiatry. Clinician at Oishei Children’s Hospital and founding chairman of the Cystic Fibrosis Foundation’s Mental Health Advisory Committee.
It will allow us to take what we have done nationally and internationally for youth and adults with CF and do it for children from 18 to 11 months.”
Beth A. Smith, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo
The study will assess the national prevalence of mental health problems in children with CF under the age of 12. It will identify the best ways to screen for mental health problems in these children, and will highlight the findings often seen in children treated with new treatments that have truly reversed CF. It will identify potential risk factors and may lead to new international guidelines on mental health screening for children with CF, just as the first TIDES it did.
Often diagnosed in infants, cystic fibrosis is a rare, chronic disease with no cure. It is a progressive, genetic disease that affects the entire body, including the ability to breathe and digest food. Managing the disease is complicated, and people with CF can spend several hours a day doing treatments to clear mucus and treat other problems; some people eventually need a lung transplant.
Amazing updates
Fortunately, the prognosis for people with CF has improved significantly over the past 20 years. That is due to the development of many methods, specialized care, as well as the development of cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapies, which precisely correct the dysfunctional protein produced by the CFTR gene. UB researchers and Oishei have been leading this research; in 2009 they enrolled the first US patient in a multicenter clinical trial of this drug.
Whereas in the 1950s -; when children born with CF lived long enough to attend primary school -; today, many people with CF grow up, marry, have families and live into retirement.
The impact these medical advances have had cannot be overstated, but the story of this disease is more complex.
Previous studies at UB and elsewhere have shown that depression in people with CF is associated with poorer health outcomes, including decreased lung function, lower body weight, increased severity and hospitalizations, and increased mortality.
In a small study by Smith and his colleagues published in 2010, they found that children with CF as young as 7 years old began to experience depressive symptoms. Smith says: “Children become sad and angry, they start to have negative thoughts about their lives, they realize that they are different from other children.
Googling someone’s death for example, only reinforces that feeling. “Even though life expectancy has improved a lot, there are a lot of problems now because people are living longer,” says Smith. “They have very high rates of colon cancer, they get CF-related diabetes because their pancreas shrinks, and the boys find out that they might not be clean. There are things that a lot that unfolds over time for these young children.”
It is true that parents are also deeply concerned and their concerns can affect the child. So, Smith says, it’s important to identify and address mental health issues early.
Changing direction
“Looking back to when I first started working with CF patients in the early 2000s, I think that if mental health screening had been a prominent feature and we had dealt with it in a way different, maybe we would have been able to change some of the mental problems,” he says.
In a previous study, Smith and colleagues found that people with CF who had chronic depressive symptoms who did not receive treatment were more likely to die than those who did. suffers from depression. He says: “It’s not that some patients didn’t have depression. “They did, but it was resolved.”
Changing those ways is part of Smith’s mission with a new child-focused grant. “Can we change these patterns if we treat depression and treat it well and help improve coping skills and self-care? Can we change the outcome so that a positive diagnosis of depression emotionally in a person with CF should not be associated with a doubling of the risk of dying?”
Part of the care team
One key to doing so requires the entire CF care team to commit to including mental health screening as part of routine patient care. Danielle M. Goetz, MD, director of the Cystic Fibrosis Center of Western New York at Oishei Children’s Hospital, clinical associate professor of pediatrics and a leading CF pulmonologist as well as co-PI on the new grant, he plays an important role.
“Pulmonologists are very important,” says Smith. “They run the clinics; it’s boots on the ground. As a mental health professional, I can say that mental health screening is important, but it will not happen without pulmonologists understanding that this is important to the overall care of CF. In our clinic, Dr. Goetz was instrumental in making sure this study worked.”
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