As Claire Dawe-McCord’s 18th birthday came closer, the thoughts of becoming an adult quickly crept into the back of her mind. However, like Dawe-McCord, several young adults must face this transition harsher than others. She was part of a group of adolescents who were being seen in their last year in pediatrics for intensive illnesses.
Nine-years-old is when it all began for Dawe-McCord.
Living in Ottawa, her family took her to the nearest hospital, the Children’s Hospital of Eastern Ontario (CHEO), after she fell extremely ill with several broken bones, and stomach pain. At one point, Dawe-McCord said she had 50 dislocations in one of her arms, and 10 in the other.
However, Dawe-McCord is a rare case.
“The entire time I was (at the hospital), (the doctors) had no idea what was wrong with me,” she said.
And as she grew older, her unknown illness would take a turn for the worse.
“When I was 16, so December 2015, I came in (to the hospital) with stomach pain again. . . which was pretty normal,” said Dawe-McCord. “They put my shoulder in, and as I was sitting there, I said ‘I feel like this is getting a lot worse.’”
In the end, Dawe-McCord was right. She was rushed back to the hospital the next morning, after the doctors found she experienced multi-organ failure.
After eight days in the intensive care unit, and several months of living at CHEO, the doctors came back with a diagnosis of hypokalemic periodic paralysis, a rare neuromuscular disorder that is found in one in 500,000 people in the world, according to Dawe-McCord.
Dawe-McCord said when she was treated at CHEO she was followed by several departments, but the only team that took time to prepare her for the adult world was chronic pain.
“They would have these group meetings at CHEO, and they were all kids that were 16 or 17, and they would ask ‘What are your conditions and medications?’” Dawe-McCord said. “For me, I thought it was pretty basic because I already was so involved in my own care, but I mean for other kids . . . (they) have no idea what’s wrong with them.”
There is no staff associated to help plan programs for preparing young adults for their transition from CHEO, according to Chantal Krantz, manager of care transitions and discharge planning. She is the only person that oversees the transition programs for young adults.
“I work with departments to help them implement the best practices,” Krantz said. “My role is really to parachute in and help the teams with the change management, and to help implement and change their practices so that they’re starting (to prepare young adults for transition) earlier.”
However, Krantz said the problem doesn’t end with CHEO. She thinks adult hospitals should be adding support for young adults, with transitioning-in programs, adding some departments at CHEO are trying their best to prepare them for the real world on their own.
One of the teams at the hospital that has already applied a transition program to their department is nephrology, an area of medicine that specializes in kidney-related illnesses. Dr. Gabrielle Weiler, a pediatric nephrologist, said their team “spearheaded (our transition program) a few years ago.”
After noticing so many of the young adults being treated in nephrology were being sent off to the adult world with no preparation, Weiler hosted a transition night, which she referred to as a “mini medical school.”
“We invited anyone 14 and above, so those who are going to be transitioning in the next three-year period,” Weiler said. “I explained on a biological level what was happening to them in terms of kidney failure.”
On that night, Weiler said that she explained why they were taking the types of medications prescribed to them and what are the risks involved. She also had the nephrology department’s dietitian speak to them about a kidney-friendly diet, and their pharmacist discuss the side effects of dialysis and anti-rejection drugs.
However, according to Weiler, this “mini medical school” is not the only preparation done by the department of nephrology. She also talks to her patients during their appointments one-on-one.
“Realistically, we’re doing the transition process from around age 13, 14,” she said. “So what I do typically, I’ll often ask the patients what their diagnosis is, what medications they’re on, and how would they get that information to, say, a doctor in the emergency department, or someone who doesn’t know them.”
According to a 2010 progress report by the Canadian Foundation for Health Improvement, 83 percent of young adults find transitioning consultations helpful, while only a small per cent “encountered difficulty in accessing services.”
Weiler’s goal for her patients is to “be as prepared as possible . . . that they have enough knowledge that they can articulate (their illness), and that they have taken ownership of their disease.”
Along with team transition programs, CHEO has developed a universal program for all young adults that are on their way to being moved to adult care.
The On My Way Transition Program includes a way to create a three-sentence health summary, a checklist for both parents and teens, and a guide on what to discuss with doctors as they move on to the adult world. The online program also features a comical and informational video created by CHEO’s Youth Forum, starring young adults and teens from all departments.
Dawe-McCord said she was a part of the creation of this video. During her time in pediatrics, she said she felt she was unable to speak on her own experiences with her illness to her doctors.
“I had to fight to say anything about my care,” Dawe-McCord said. “They would have group meetings across all the departments . . . they would invite my parents into the meetings, and not me.”
Dawe-McCord said CHEO needs to allow young adults to take control of their own illnesses, without their parents, and this will allow them to be more prepared for adult care.
Dawe-McCord said, because she’s able to take a stand for her own care, she’s enjoying her time in the adult world.