There is strong agreement in the cystic fibrosis community that mental health is an important aspect of CF health. Individuals with CF and family caregivers are at elevated risk for symptoms of depression and anxiety, which are associated with poorer quality of life and health outcomes. 

Continued improvements in therapy and health management have led to dramatic increases in the life expectancy of people with CF. For those eligible for novel therapies such as CFTR modulators, these advancements can come with new challenges, including mental health concerns and navigating life that may include residual/advanced disease, new experiences, and unexpected responsibilities. Those who are not yet eligible for or intolerant to novel therapies may also continue to experience disproportionate treatment burden and mental health concerns. Thus, individuals with CF continue to be at risk for experiencing mental health challenges regardless of eligibility for novel therapies. 

Because of the wide variety of mental health concerns and needs of the CF population, the Cystic Fibrosis Foundation has formed the Prioritizing Research in Mental Health (PRIME) Working Group, which is dedicated to mental health research. For the purposes of this group, we define mental health as encompassing a broad range of biopsychosocial concerns impacting people with CF and their families, including the Foundation’s mental health research areas of focus.

Mental Health Research Areas of Focus

In 2019, the Foundation initiated a comprehensive effort to identify areas of focus for future research in CF mental health, conducting a large national survey of the CF community and CF healthcare providers and convening a mental health research priorities workshop. The resulting areas of focus for CF mental health research include:

• Depression/mood disorders
• Anxiety
• The impact of CF management (e.g., treatment burden) on mental health
• The interrelationships of mental and physical health for people with CF
• The effects of CF on families

Additionally, mental health conditions understudied in people with CF emerged as priorities, including:

• Procedural anxiety and medical trauma
• Substance misuse
• Disordered eating
• Interactions between medications (e.g., CFTR modulators) and mental health
• Attention-deficit hyperactivity disorder (ADHD)
• Executive dysfunction and neurocognition
• Sleep disturbance

Mission and Objectives 

The mission of the PRIME working group is to advance our knowledge of mental health conditions in the CF population throughout the lifespan and promote clinical and translational research that will improve the understanding, prevention, diagnosis, and treatment of mental health concerns of CF. This project aligns with the Foundation’s mission to improve the lives of people with CF.

The objectives of the working group are to:

• Identify and evaluate gaps in knowledge that, if addressed, would make a significant impact on the working group’s mission 
• Accelerate new knowledge about mental health complications in CF and disseminate information to the CF research community and other stakeholders 
• Develop strategies (e.g., interdisciplinary collaborations, multicenter clinical research studies) and necessary infrastructure to efficiently move research priorities forward

For more information regarding this initiative and the working group, please contact Dr. Anna Georgiopoulos at ageorgiopoulos@partners.org.

PRIME Working Group Membership

The members of the working group include:

	Anna M. Georgiopoulos, MD, Chair Associate Professor of Psychiatry Consulting Psychiatrist, Adult & Pediatric Cystic Fibrosis Programs Massachusetts General Hospital/Harvard Medical School
	Christina Jayne (CJ) Bathgate, PhD, Vice Chair Associate Professor of Medicine Department of Medicine Division of Neurology and Behavioral Health National Jewish Health, Denver
	Robin S. Everhart, PhD, Member Associate Professor Department of Psychology Virginia Commonwealth University
	David Fedele, PhD, ABPP, Member Associate Professor Department of Clinical & Health Psychology University of Florida, Gainesville
	Jianghua (Wendy) He, PhD, Member Professor of Biostatistics Department of Biostatistics and Data Science University of Kansas Medical Center
	Freda Liu, PhD, Member Attending Psychologist, Seattle Children’s Hospital Cystic Fibrosis Center Associate Professor, Department of Psychiatry and Behavioral Sciences University of Washington School of Medicine
	Scott W. Powers, PhD, ABPP, FAHS, Member Professor of Pediatrics, University of Cincinnati College of Medicine Endowed Chair, Cincinnati Children’s Research Foundation Pediatric Psychologist, Division of Behavioral Medicine and Clinical Psychology Cincinnati Children’s Hospital
	Leah Reznikov, PhD, Member  Associate Professor Department of Physiological Sciences University of Florida
	Kristin Riekert, PhD, Group Advisor Professor of Medicine Department of Pulmonary and Critical Care Johns Hopkins University, Baltimore
	Emma Tillman, PharmD, PhD, Member Research Associate Professor  Indiana University School of Medicine
	Katie Kirby, Community Member Adult with CF
	Kasey Raffensperger, Community Member  Adult with CF
	Kyle Traver, Community Member  Parent of children with CF