Eighteen-year-old Gabrielle Setchell was referred to the BC Children's Hospital Heart Centre after years of persistent, unexplained symptoms including stomach pain, severe headaches and fatigue.
After a battery of tests, Gabrielle was diagnosed with dysautonomia, a disorder of the autonomic nervous system. It's a complex condition that can affect multiple organs in the body, such as the heart and intestines "My brain and nervous system don't connect properly in my body, so the signals are not communicating," Gabrielle explained.
Gabrielle had the opportunity to join an in-person patient support group, but the idea just didn't appeal to her.
Luckily, Gabrielle's cardiologist, Dr. Katey Armstrong, had a different type of support: weekly texts.
Katey and the Heart Centre knew there were communications gaps with their teen patients, and saw how a lack of connection could impact care long-term.
"At BC Children's Hospital, we interact closely with the parents and caregivers, often starting from the time our patients are babies," said Katey.
"But what happens as the patients grow up, and need to become more independent? How do we build relationships with them directly, in addition to their parents and caregivers?"
One recent review of adolescent transplant recipients transitioning from child to adult care found that some of these young adults were becoming less engaged with their own care, missing appointments and routine bloodwork. As a result, eight to 10 per cent would lose their graft organs as teens or young adults - a catastrophic outcome.
Even before teens transition to adult care, better connections and ongoing communication is crucial for day-to-day care and health behaviours, said Astrid De Souza, a clinical exercise physiologist in cardiology at BC Children's Hospital.
"Kids in cardiology have complex health situations that require a team of people to take care of them," said Astrid. "But we see a lot of these patients might not fully understand their own heart condition and care - it's often their parents dragging them to appointments."
Katey and Astrid at the BC Children's Hospital Heart Centre
The Heart Centre team launched a research project, starting with focus groups to learn from teens about their communication preferences.
"Rather than assuming or guessing, we just asked what the patients wanted - and they said texting," explained Katey.
A Vancouver non-profit called WelTel provided the technical platform for secure, bi-directional clinical texting, and the team at BC Children's Heart Centre set up pilot research projects, enrolling patients like Gabrielle.
Pre-pandemic, Katey and Astrid working to pilot the WelTel platform
Weekly, these patients get texts asking "How are you?"
When a patient replies, a team of clinicians reads and triages responses, to address any care concerns or questions, provide encouragement, or schedule in-person appointments if needed.
Texting is now a key part of Gabrielle's support system.
"During the week, it's nice to interact with doctors who understand what I'm going through and encourage me," said Gabrielle. "For example, if I tell them I'm stressed with school, they give me tips to handle the stress more effectively."
Gabrielle doesn't talk about her condition much with her friends. Many of her symptoms - like fatigue and stomach problems - are things lots of people experience, so it can be hard to describe the unique challenges of living with a medical condition like dysautonomia.
"Throughout this disease, there are times I get down and don't feel motivated," Gabrielle said. "Getting these texts is a really important support for me."
Gabrielle with her family
Weekly texts are game-changing for care providers, too.
"In my years of practice, if one thing has really transformed the way I interact with my patients, it's being able to chat to them on this platform," said Katey.
"We get to text about their care, but also about things like their birthday plans and favourite bands," Katey explained. "And, building those relationships is key for our patients to see themselves in the drivers' seat of their own health care."
A strong relationship makes all the difference to help patients with ongoing, at-home aspects of care like exercise, said Astrid. It only takes about 15 minutes per week for her to text with patients - significantly less time than phone calls or appointments.
"When those patients come in for an appointment, I can start a real conversation," said Astrid. "Most importantly, we get to show teens that we care and we're listening to them." After more than 15 years as a clinical exercise physiologist, Astrid finds that texting finally enables her to provide the care in ways she's always wanted to.
The BC Children's Heart Centre team are continuing to learn and build the evidence base for how to best care for and communicate with their teen patients, and is expanding the research to additional patient groups.
"The possibilities are endless." said Astrid "It's a little idea, but this research has such big potential to revolutionize how we're providing care."
BC Children's Hospital Research Institute is part of BC Children's Hospital and the Provincial Health Services Authority, supported by BC Children's Hospital Foundation and working in close partnership with the University of British Columbia. With more than 350,000 square feet devoted to research, our institute is the largest of its kind in Western Canada - in terms of people, productivity, funding and size.
Cardiac Services BC works to ensure all British Columbians have access to the best possible cardiac care by working with the health authorities to improve the way cardiac services are managed and accessed throughout the province. It also ensures quality access and sustainability within B.C.'s cardiac care system and promotes knowledge translation and system transformation.