Older & Wiser: The complexities of ageing with cystic fibrosis with Dr. Anne Stephenson 

OCTOBER 16, 2023

Last month, Cystic Fibrosis Canada had the pleasure of hosting a webinar with Dr. Anne Stephenson on her study Getting Older & Wiser: the complexities of ageing with CF, which was recently funded by Cystic Fibrosis Canada. Her study explores the changing demographics of people with CF and the emerging conditions associated, while offering insights into the future of CF.  

Dr Stephenson’s research is conducted by using data from the CF registry and IC/ES, which collects health administrative Data in Ontario. Her study is focused on the period from January 2002 to December 2022 to compare and explore the changes in the health of people living with CF.  

In case you missed the webinar, we have all the insights, along with the video linked below! 

Changing demographics of people with CF  

How have things changed for people living with CF in Canada? According to Cystic Fibrosis Canada’s 2021 Canadian CF Registry, we’ve seen a notable shift in demographics. Approximately 65% of people living with CF are over the age of 18, and 20% are over the age of 40. Dr. Stephenson points out that these numbers are continually increasing due to improved survival rates.   

Dr. Stephenson also highlights there has been a remarkable shift in the median age of survival as a direct result of emerging therapies, advancements in lung transplants, antibiotic treatments, and modulator therapies that have consistently improved survival rates over time. The median age for a Canadian born with CF has increased from 25 years old in 1984 to an impressive 57.3 years in 2021. “This means, any child born with CF today would have a 50% chance of living beyond the age of 57 years old” states Dr. Stephenson. 

Dr. Stephenson highlights a 25% increase in a healthier adult population by 2030. This presents a new challenge for CF clinicians as the CF community rises. Dr.  Stephenson speaks on the idea of diving CF clinics into two categories: one for young adults and another for more generalized care as people with CF grow older. 

Identifying emerging conditions 

As people with CF are living longer, they may face a range of health challenges that were not previously recognized within the CF population, such as cardiovascular diseases, kidney diseases, obesity, menopause, and metabolic disorders.  

As Dr. Stephenson explains, these emerging conditions necessitate routine screening, which wasn’t a top priority in CF care in the past due to the complexity and life expectancy of the disease. However, it’s still to be further studied whether people with CF are receiving the necessary screenings to detect these health conditions and risks early on, and whether having a primary care provider influences if individuals are getting these screenings or not.  

These are the types of issues Dr. Stephenson plans to investigate with this study.  

“By delving into the unique healthcare demands and complexities faced by individuals aging with CF, we can tailor care strategies, treatment regimens, and screening protocols to address their specific needs, ultimately improving their quality of life and well-being well into adulthood. This research not only benefits the CF community but also contributes to the broader understanding of aging-related health issues in a unique context, offering valuable insights for healthcare systems and practitioners,” said Dr. Stephenson. 

Dr. Stephenson’s study will continue to be a stepping stone for future research in the ever-changing world of cystic fibrosis. This area of research will continue to compare data to establish rates of complications in the pre modulators era of CF with the emerging present and future complication rates with modulators. Dr. Stephenson’s goal is to provide information and data to inform CF care specialists for increased awareness and primary care for those facing the disease.  

To watch the complete webinar and Q&A with Dr. Stephenson. (Please note the webinar is only available in English)