Boston — A new study published by PureTech Health in BMC Pulmonary Medicine reveals the often-overlooked physical, emotional, and social burdens experienced by people living with idiopathic pulmonary fibrosis (IPF). Conducted in collaboration with experts from the University of Alabama at Birmingham, Vanderbilt University Medical Center, and the Pulmonary Fibrosis Foundation (PFF), the research highlights significant gaps in diagnosis, treatment uptake, and disease management, underscoring the urgent need for more patient-centered approaches and effective therapies.
The study, based on interviews and surveys with 106 individuals across the United States, explores how IPF affects nearly every aspect of life, from health and mobility to relationships and mental well-being. Although antifibrotic medications exist, many patients delay starting treatment, often waiting until symptoms worsen. Even among those on therapy, side effects and unclear expectations about benefits complicate adherence and impact quality of life.
“It’s remarkable that despite the availability of approved therapies, antifibrotic uptake remains persistently low,” said Dr. Camilla Graham, Senior Vice President of Medical Affairs at PureTech and lead author of the study. “This reflects fundamental gaps in understanding the experiences of people with IPF. By integrating their perspectives into diagnosis, disease management, and treatment development, we can build a more empathetic and effective care model.”
Dr. Tejaswini Kulkarni, a co-investigator from the University of Alabama at Birmingham, noted that delays in diagnosis are common and often stem from misidentification or prolonged evaluations for other conditions. Participants reported turning to online resources and peer support groups for information, suggesting a need for more accessible and reliable educational tools. The emotional toll of the disease, compounded by logistical and financial challenges, also emerged as a key theme.
“This work uniquely captures the real-world experiences of people living with IPF,” said Dr. Kulkarni. “It highlights critical gaps in education, awareness, and early intervention that we see in clinical practice.”
Supplemental oxygen, while often necessary, was described as both a lifeline and a burden. Patients acknowledged the relief it provides but also detailed the lifestyle disruptions, stigma, and costs associated with its use. Many reported needing better guidance on how to manage both the physical and psychological impact of oxygen therapy.
More than 85% of participants reported managing additional health conditions alongside IPF, pointing to a clear need for coordinated, multidisciplinary care. Integrated care strategies that address comorbidities could significantly improve outcomes and ease the overall burden on patients and caregivers.
Dr. Jessica Shore of the Pulmonary Fibrosis Foundation emphasized the importance of patient-driven research. “This study provided an opportunity to truly listen to patients and understand their experiences with diagnosis, therapy, and oxygen use,” she said. “The findings will help strengthen advocacy, improve education, and ensure that patient voices are at the center of care decisions.”
PureTech sponsored the study as part of its broader mission to develop more meaningful and responsive treatments for severe diseases. The company hopes the findings will serve as a call to action for healthcare providers, researchers, advocacy groups, and the biopharma industry to work together in addressing the real-world needs of those affected by IPF.
