People living with cystic fibrosis, a life-threatening disease with no known cure, have daily requirements that include physiotherapy, medication and exercise that takes a minimum of 1.5 hours of their day. Living with the disease and navigating the daily treatments can take a toll on mental health and overall wellbeing. Cystic Fibrosis Care BC (CF Care BC) is working to improve mental wellbeing for patients and families.
Cystic fibrosis affects the whole body – sinus, liver, pancreas, reproductive organs, lungs and the digestive system. Thanks to significant strides in care made over the past few decades, the average age of survival for people with cystic fibrosis in Canada has increased from four years in the 1960s to 57 years in 2019. In British Columbia, there are now more adults with cystic fibrosis than children.
“Now that we’re living longer, people with cystic fibrosis definitely need more support with mental health and social areas,” says Abby McFee of Victoria, who lives with cystic fibrosis.
Improving mental health for approximately 600 people in B.C. living with cystic fibrosis was identified as a high priority when CF Care BC launched in 2021. In order to improve outcomes and overall health, a system was needed that was responsive, equitable and cost effective.
CF Care BC set out to determine current practices for mental health and chronic disease through a working group comprised of clinicians from the four B.C. cystic fibrosis clinics. Their extensive review resulted in a stepped model of care that is new to cystic fibrosis mental health and is now being piloted.
This model helps people with cystic fibrosis wherever they are in their journey, depending on the severity of their mental health symptoms. It adapts to patient’s needs without a significant cost to the health-care system. It also promotes the use of existing community resources.
The team at CF Care BC have supported many new improvements in the model of care, which are expected to have a positive impact on patient and family wellbeing. Changes include addressing Step 1 and 2 of the model through:
- A Mental Health Navigator role: CF Care BC added a Mental Health Navigator position to support clinicians with connecting patients to available community mental health resources. The role also works to strengthen the connection with community resources through dialog and education.
- Mental health database: Available resources have been collated into a searchable database, based on location and need. Currently accessible to clinicians, but soon to be developed into online database for patients.
- CF 101 education module: A LearningHub module for all clinicians to access (on the PHSA internal network). The course information helps reduce barriers at all connection points, and aims to reduce patient anxiety throughout the system.
- Online group Cognitive Behaviour Therapy: Working with collaborators at the University of Regina and Massachusetts General Hospital Cystic Fibrosis program, the CF care BC team is developing an online CBT group program to strengthen resiliency in the face of chronic disease.
- Peer-to-peer programs: The CF Care BC team is collaborating with the Cystic Fibrosis Foundation to develop peer-to-peer programs to provide mentorship, support and education to patients by patients.
To address Step 3 of the model:
- Psychology support: The addition of an adult psychologist. Referrals to the psychologist are made through the cystic fibrosis clinics in B.C., based on patient need. Moderate cases will have access to psychology support for episodic-based consultation. Recruitment for a pediatric psychologist is in progress.
The evaluation of outcomes from the project, and the successful submission of a business case for ongoing funding will help ensure that the mental health of those living with cystic fibrosis will continue to be addressed across B.C.
Max Creighton of Nanaimo lives with cystic fibrosis and is grateful for added support. “Having additional support, especially from nurses and specialists who understand what you’re going through, is really positive for people in B.C.”
The wider impacts of this project extend beyond cystic fibrosis. There is potential for the model to be adapted to other chronic disease conditions, due to the leveraging of existing community resources that address mental health.