Emory gets $3.1M NIH grant to improve quality of life with CF
5-year study will look for links among symptoms, include patient input
A five-year study led by scientists at Emory University in Georgia aims to identify new ways to improve quality of life for people with cystic fibrosis (CF).
The study, which will be led by Dio Kavalieratos, PhD, director of research at the Emory Palliative Care Center, is funded by a $3.1 million grant from the National Heart, Lung, and Blood Institute, part of the National Institutes of Health.
“Our goal is to develop a nuanced, person-centered understanding of cystic fibrosis symptoms,” Kavalieratos said in a university press release.
CF is a genetic disorder characterized by abnormally thick and sticky mucus, which builds up in the lungs and other organs and leads to symptoms such as respiratory problems and digestive difficulties.
For most of human history, the vast majority of CF patients didn’t survive beyond childhood. As recently as 1990, most CF patients didn’t live past 30. But advances in medical care have radically transformed outcomes in recent decades, and most people with CF are now expected to live past 50.
Changing face of CF leads to quality of life focus
The changing face of CF in the 21st century has forced a change in how clinicians think about the disease. Instead of being focused on merely keeping patients alive, there’s increasingly more attention paid to quality of life and finding ways that clinicians can make day-to-day life with CF easier for the people living with it.
“Often, as people living with CF, we have been told that pain, fatigue, and other quality of life issues are just part of living with cystic fibrosis,” said Cade Hovater, a patient investigator who helped plan the study. “However, over the past decade we saw research into CF mental health lead to changes in how mental health needs are addressed in CF clinics.”
The study, dubbed Patient-centered Understanding of Quality of Life, Symptoms, and Health Equity in Cystic Fibrosis (PULSE-CF), aims to enroll 140 adults with CF over the next few years. Patients will provide reports about the symptoms they experience, and researchers will collect blood and other biological samples for testing.
The researchers will perform analyses using the gathered data, looking for associations, such as whether patients who report chronic cough also tend to experience other symptoms like fatigue. They will also investigate whether specific symptoms are linked with changes in biological measurements, and conduct interviews with participants aiming to better understand their experiences and identify common areas where support is needed.
“Looking side by side at how CF affects someone metabolically, physically, mentally, and in daily life will give us new targets to prevent and treat symptoms,” Kavalieratos said. “To our knowledge, this is one of the first studies to integrate sophisticated metabolomic analyses with qualitative research methods — to compare what is happening at the molecular level with a person’s lived experience managing and adjusting to burdensome symptoms.”
Kavalieratos is running the study in partnership with scientists at Emory, Augusta University, the University of North Carolina at Chapel Hill, the Georgia Cystic Fibrosis Research and Translation Center, and patients.
“I am hopeful that PULSE-CF will provide evidence to improve care for the pain, fatigue, and other symptoms that often go under-treated or untreated,” Hovater said.
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