Study aims to help sick kids transition to adulthood
Could bring good news for cystic fibrosis patients
Fiona Moola, an assistant professor in the Faculty of Kinesiology and Recreation Management and a Scientist at the Children’s Hospital Research Institute of Manitoba, is leading a study aimed at improving the health outcomes of children and young people living with the genetic disease as they transition to adulthood.
Those living with cystic fibrosis usually spend over a decade in the pediatric system receiving care for the disease.
Research suggests that when young people transition into the adult health care system, their health outcomes tend to dramatically decline.
“We don’t know exactly why that’s happening,” says Moola.
But the U of M researcher has a few theories.
Moola says chronically ill children are typically quite dependant on their parents and health care providers.
“When you move over from a system where everything is done for you to a system where one has to make significant decisions on their own, philosophically these two systems are opposed,” Moola adds. “Physical health and psychological health outcomes tend to plummet during that transition, between 18 and 24 years.”
This can have very devastating consequences for the long-term health of young people with cystic fibrosis.
Research also shows that over 50 per cent of people with the illness live with depression, anxiety, and behavioural disorders that stem from having cystic fibrosis.
“As children with cystic fibrosis approach their teen years and begin to better understand the illness, we observe a reduction in treatment adherence and the onset of mood disorders. This may be one of the reasons as to why young patients with cystic fibrosis are often not motivated to take control of their health,” says Moola.
Moola’s research team was awarded almost $50,000 from Vertex Pharmaceuticals as part of the company’s Cystic Fibrosis Circle of Care grant to study and analyze this pivotal transition period.
In her study, 30 transitioning patients will be enrolled into a one-year program at the Health Sciences Centre’s pediatric and adult respirology clinics. Those living with the disease will be provided with counselling, mentorship, friendship, education, and support to help them navigate that instrumental developmental period.
The focus will be on 14-24 year olds who are having difficulty with transition. Patients will receive guidance on such themes as employment, health behaviours, being interdependent instead of dependent, relationships, health insurance, social support, and medication education.
“We’re hoping see that education and knowledge about one’s disease will improve psychological parameters such as a sense of control and self-efficacy,” adds Moola. “Hopefully this improves quality of life for young people living with cystic fibrosis.”