My name is Kelly Ann Quinlan and I am 19 years old. I was diagnosed with cystic fibrosis at birth. My 24-year-old brother Michael also has cystic fibrosis, which is a challenge, as we both live in the same home but must live separately to a degree. We are very close to our parents and sometimes they struggle with the extra duties and constant cleaning that comes with raising two CF children.Read More
How CF Care Is Delivered
Cystic fibrosis (CF) clinics provide specialized multidisciplinary care for individuals with cystic fibrosis. In Canada, there are CF clinics in most major cities, all within a hospital setting, and many with a university affiliation.
CF patients are seen by various healthcare professionals at each clinic visit, and during hospitalization. This multidisciplinary approach optimizes the care delivered – regular interaction with healthcare professionals at clinic visits that include all team members offer convenient, comprehensive care and promote a long-term association with CF clinical care. Cystic fibrosis must be treated throughout life, and it is important that affected individuals develop a comfortable, trusting relationship with clinic personnel.
Currently, most individuals with cystic fibrosis attend clinic once every three or four months, and consult with all clinic team members at each clinic visit; these team members include the physician and nurse, along with the dietitian, physiotherapist, social worker, pharmacist, and others.
Our role in Healthcare
To prioritize and address emerging health issues in CF, Cystic Fibrosis Canada regularly convenes our Healthcare Advisory Committee (HAC), consisting of representatives from all health disciplines and people with lived experience. In 2022, our HAC developed the CFTR Modulator Consensus Guidelines to account for the expansion of Trikafta to the 6+ group and to better support clinicians in their prescribing of modulator therapies. This work helped to facilitate the rollout of Trikata in our community.
Cystic Fibrosis Canada has a unique role at the intersection of CF health and community. Every year we bring together Canadian clinic staff from across the country to facilitate best practices, ensuring every clinic is armed with the latest knowledge to take back to their patients. Cystic Fibrosis Canada also provides clinic incentive grants to all 40 sites to promote continuous education for staff, and in 2022, we awarded two aspiring CF clinicians with clinical fellowships, investing in the future of Canadian CF care.
With the disease in a state of transition, it’s important that Canadians with CF continue to feel supported. To promote healthcare outside of the clinics, Cystic Fibrosis Canada hosts information sessions for people impacted by cystic fibrosis on needed topics. Recently, we’ve hosted sessions on exercise, mental health and wellness and COVID-19. As well, we developed a resource in collaboration with our Adult Cystic Fibrosis Advisory Committee to support youth in the transition from pediatric to adult CF care, which is often a challenging time.