A psychiatrist from the University at Buffalo (UB) has received $3 million from the Cystic Fibrosis Foundation to enhance mental health screening and treatment for children with cystic fibrosis (CF). This initiative builds on previous research aimed at integrating mental health into routine care for both adults and adolescents with CF.
The new study, called TIDES 2.0, expands upon the International Depression Epidemiological Study (TIDES), which started in 2014. This prior study was the largest investigation into mental health issues in CF patients and successfully established annual screening for depression and anxiety as standard practice for nearly 90% of U.S. adults and adolescents with the disease.
Dr. Beth A. Smith, the principal investigator, leads the TIDES 2.0 study. She is the interim chair of psychiatry at UB and medical director of the Children’s Psychiatry Clinic at Oishei Children’s Hospital. Smith emphasized that the goal of the new study is to evaluate the prevalence of mental health issues in children with CF under 12 years old. The research will identify effective screening methods and characterize common mental health challenges faced by these children, especially those receiving innovative therapies that have transformed CF treatment. The findings may lead to new international guidelines for mental health screening in young CF patients.
Cystic fibrosis is a rare genetic disease often diagnosed in infants. It severely affects respiratory and digestive functions, requiring complex management that can include several hours of daily treatments. In some cases, patients may eventually need lung transplants.
Over the past two decades, advancements in specialized care and the introduction of cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapies have significantly improved the prognosis for those with CF. Researchers at UB and Oishei were instrumental in this progress, having enrolled the first U.S. patient in a clinical trial for these therapies in 2009.
Today, many individuals with CF live longer, healthier lives, in stark contrast to the 1950s when few children with the disease lived to attend elementary school. However, with longer life expectancy come new challenges, including higher rates of depression, which can negatively impact health outcomes. Studies show that depression in CF patients is linked to decreased lung function, lower body mass index, and increased hospitalizations.
Smith’s previous research indicates that children as young as seven can exhibit symptoms of depression. They often feel isolated and experience negative thoughts about their condition. Concerns about their health can also affect parents, which underscores the importance of early mental health intervention.
Reflecting on her experiences since the early 2000s, Smith noted that addressing mental health earlier might have altered the trajectories of some patients. Her earlier research showed that untreated chronic depression in CF patients correlates with higher mortality rates compared to those who received treatment.
Smith aims to change these outcomes with the new grant, focusing on improving mental health care for children. She asks, “Can we change the trajectory if we treat depression effectively and help with coping skills and disease management?”
Integral to this effort is the commitment of the entire CF care team to include mental health screening as part of standard care. Dr. Danielle M. Goetz, a leading pulmonologist and co-principal investigator on the grant, plays a key role in this initiative. Smith highlighted the importance of pulmonologists in implementing mental health screening, stating, “They run the clinics; they’re the boots on the ground.” Goetz has been essential in ensuring the success of the study at their clinic.
