PAIN in adults with cystic fibrosis (CF) has long been underrecognized, and a new study reveals troubling insights into its prevalence and management. Research indicates that more than 70% of people with CF (pwCF) experience pain, a significantly higher rate compared to only 28% of healthy controls. This data comes from a recent Australian study conducted from July 2023 to February 2024, using validated tools to assess the frequency, severity, and locations of pain experienced by patients with CF.
The study involved 206 participants, including 117 adults with CF and 89 healthy controls. Findings revealed that adults with CF reported not only a higher prevalence of pain but also more frequent pain episodes. Around 40% of pwCF experienced pain monthly, in contrast to just 10% of healthy controls. The study also uncovered a clustering effect where patients reported multiple pain locations across their bodies, exacerbating the complexity of their condition.
While the study did not find significant differences in pain severity or locations between those using CFTR modulators and those not, it highlighted a critical gap in pain management. PwCF expressed a considerable lack of relief from over-the-counter therapies, with results showing a significant difference in the effectiveness of pain relief (p=0.002). This suggests that the pain experienced by CF patients is often inadequately managed, leading to a diminished quality of life.
The study underscores the urgent need for better awareness and intervention strategies within CF clinics. Healthcare providers must recognize the widespread impact of pain on their patients and implement more effective clinical pathways for its management. By addressing these unmet needs, there is potential to improve health outcomes and quality of life for people living with cystic fibrosis.
Reference: Ward A et al. Pain in adults with cystic fibrosis – Are we painfully unaware? J Cyst Fibros. 2025. doi: 10.1016/j.jcf.2025.01.009.
Anaya Malik | AMJ