Dr. Fiona Moola, University of Manitoba assistant professor in the department of kinesiology and recreation management and scientist at the Children’s Hospital Research Institute of Manitoba, was recently awarded $50,000 from Vertex Pharmaceuticals to apply to her current research on cystic fibrosis – a chronic illness affecting approximately one in every 3,600 Canadian children, making it the most common fatal genetic disease among Canadian children.
“There is an overall increase in prevalence of children living with chronic illnesses and therefore we have to meet their psychosocial needs, their psychological wellbeing, and their integration into society,” Moola said.
“I think there is a demand for this type of research – children with chronic illnesses are living longer lives thanks to advances in the medical field. Now we need advances in psychological wellbeing to follow.”
Cystic fibrosis is an aggressive chronic illness that primarily affects the lungs and the digestive system. People with cystic fibrosis inherit a defective gene that causes bodily secretions, such as sweat, mucous, and digestive juices, to become thick and sticky – clogging up passageways and tubes.
In addition to the physical symptoms of cystic fibrosis, many individuals transitioning into the adult system experience psychological distress as well. Roughly 50 per cent of people living with cystic fibrosis also suffer from depression, anxiety, and other behavioural disorders.
“A lot of people don’t know about cystic fibrosis because it is a rare condition, but it is really hard to live with,” said Moola. “It places an enormous psychological burden on the child and the family – it’s a very difficult illness.”
Her study is focused on determining what factors lead to better health outcomes for cystic fibrosis patients transitioning from the pediatric healthcare system to the adult healthcare system, where there tends to be a dramatic deterioration in patient health.
While the reasons for the drop in health outcomes are currently unknown, Moola has some ideas.
“In the pediatrics health care system, they really promote a lot of dependency on parents to do things for children, rather than the children learning how to be independent with their own health. So then when they transition, there’s a very dramatic philosophical shift that happens and they are not really prepared for it,” explained Moola.
“I think another reason is a lack of funding for opportunities to better prepare youth to transition.”
Her study will follow 30 individuals between the ages of 14 and 24 who are having difficulty transitioning from pediatrics to the adult healthcare system. Participants will be enrolled in a one-year program at the Health Sciences Centre respiratory clinic and receive counseling, education, and further support as needed from a transition co-ordinator.
“Everyone will be paired with what is called a transition co-ordinator and for one year, they’ll help them learn how to increase their transition capacity. So talking about things like how to tell your boss about cystic fibrosis, how to negotiate health insurance, how to be in a healthy relationship, and how to independently manage your own health behaviour.”
The idea behind the study is to do a comparative analysis between participants at the beginning and at the end of the one-year program to determine the benefits of a structured support system during the transition period.
“The goal of my research is to improve health and transition outcomes for young people with cystic fibrosis. We hope that the program will help with their mental health, their quality of life, and their health behaviour,” she said.
“If we find that, because we never know what we’ll find in research studies, it will certainly provide an excellent evidence-based rationale for things like a mentorship program for kids transitioning to the adult healthcare system.”