Revolutionizing Mental Health Care for Children with Cystic Fibrosis

A University at Buffalo psychiatrist has been awarded a million grant from the Cystic Fibrosis Foundation to focus on the mental health of children with the disease. The new study, an outgrowth of the International Depression Epidemiological Study (TIDES), aims to evaluate the national prevalence of mental health concerns in children with cystic fibrosis under 12 years of age, identify the best ways to screen for these issues, and characterize the mental health challenges faced by children receiving the latest cystic fibrosis treatments.

Transforming the Trajectory of Cystic Fibrosis Care

Addressing the Mental Health Needs of Children with Cystic Fibrosis

The new study, led by Dr. Beth A. Smith, a psychiatrist at the University at Buffalo, is a critical step in addressing the mental health needs of children with cystic fibrosis. Cystic fibrosis is a rare, chronic disease that affects the entire body, including the ability to breathe and digest food. Managing the disease is complex, and individuals with cystic fibrosis can spend several hours a day on treatments to clear their airways and address other complications. In some cases, individuals may eventually require a lung transplant.Fortunately, the prognosis for people with cystic fibrosis has improved dramatically in the past 20 years, thanks to advancements in multidisciplinary, specialized care and the development of cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapies. These therapies precisely correct the malfunctioning protein made by the CFTR gene, revolutionizing the treatment of the disease. However, as individuals with cystic fibrosis live longer, they face a growing number of comorbidities, including colorectal cancer, CF-related diabetes, and potential infertility in boys.

The Importance of Early Intervention and Mental Health Screening

Previous studies have shown that depression in people with cystic fibrosis is linked to worse health outcomes, including decreased lung function, lower body mass index, increased exacerbations and hospitalizations, and increased mortality. Dr. Smith and her colleagues have found that children with cystic fibrosis as young as 7 years old can start to exhibit depressive symptoms, such as sadness, irritability, and negative thoughts about their lives.The new study aims to identify the best ways to screen for mental health issues in children with cystic fibrosis and characterize the specific challenges they face. By addressing mental health concerns early on, the researchers hope to change the trajectory of the disease and improve overall outcomes for these children.

Integrating Mental Health Care into Cystic Fibrosis Treatment

A key aspect of the new study is the commitment of the entire cystic fibrosis care team to include mental health screening as part of standard patient care. Dr. Danielle M. Goetz, the director of the Cystic Fibrosis Center of Western New York at Oishei Children's Hospital and a co-principal investigator on the grant, plays a critical role in ensuring that mental health screening is integrated into the routine care of children with cystic fibrosis.The involvement of pulmonologists, who run the clinics and are the "boots on the ground" in cystic fibrosis care, is essential. By working closely with mental health clinicians like Dr. Smith, the pulmonologists can help ensure that mental health screening and treatment become an integral part of the comprehensive care provided to children with cystic fibrosis.

Building on the Success of the TIDES Study

The new study, dubbed "TIDES 2.0," is an outgrowth of the International Depression Epidemiological Study (TIDES), which began in 2014 and was the largest study of mental health in adolescents and adults with cystic fibrosis. As a result of TIDES, annual screening for depression and anxiety is now part of routine cystic fibrosis care for nearly 90% of adults and adolescents with the disease in the United States.The goal of TIDES 2.0 is to take the lessons learned from the original TIDES study and apply them to the mental health of children with cystic fibrosis, from 18 months to 11 years old. By identifying the prevalence of mental health concerns in this younger population, developing effective screening methods, and characterizing the specific challenges they face, the researchers hope to pave the way for the adoption of new international guidelines on mental health screening for children with cystic fibrosis.