This feature appears in Ottawa Magazine’s May 2014 issue.
By ROGER COLLIER For young people with chronic health conditions, turning 18 signals an important milestone. That’s when they transfer from nurturing, family-centred pediatric hospitals to the overcrowded, fragmented adult health care system. Not all make it to the other side “The scariest thing ever”
At the age of nine, while lounging on the floor of a friend’s home, playing Monopoly, Sarah Mercer attempted a feat that put her in hospital for three days: she tried to get up. Unfortunately, her left knee had other plans, opting to fracture rather than co-operate.
“That’s when I began using my wheelchair,” says Mercer. “I started walking again later, but I kept falling and breaking my bones.”
Mercer has spina bifida, scoliosis, osteoporosis, and a blood-clotting disorder called factor 5 Leiden. She was born with club feet, two hernias, and a partially split spinal cord. There have been about 40 surgeries over the years, the first when she was 12 days old. Her feet have been reconstructed, her spine has been fused, and several of her tendons are no longer in their original locations.
In short, Mercer’s health problems are chronic and complicated. Injuries, surgeries, pain, medication — these have always been parts of her life and always will be. At the Children’s Hospital of Eastern Ontario — or CHEO, as it’s known to everybody in Ottawa — Mercer is on a first-name basis with people in many departments.
Though the thought of yet another surgery doesn’t faze Mercer, there was always one thing that did worry her: a date. January 24, 2013. That was the day she turned 18, which meant her time at CHEO was coming to an end.
“It’s the scariest thing ever,” says Mercer. “The doctors there are like family. They’ve seen me grow up. They’ve been through really tough times with me. Leaving them is like graduating from high school or moving out of your family’s home. It’s very nerve-wracking.”
Mercer is hardly the only young person with a chronic disease to bid farewell to a children’s hospital with some trepidation. When patients “age out” of the pediatric system, typically at 18, they encounter an entirely different culture of care. They leave a nurturing, family-centred facility where all their health needs — physical and mental — are addressed under one roof. In pediatric hospitals, patients receive care from multidisciplinary teams, which could include nurses, physiotherapists, social workers, surgeons, psychologists, pain specialists, and other health professionals.
On the other hand, the adult health care system they enter is fragmented and difficult to navigate, particularly for those who require the services of many medical providers. Someone like Mercer, for instance, will have to visit multiple locations across the city. As well, the adult system is bloated with elderly patients, who outnumber young adults by an ocean-wide margin. Welcome to waiting lists, shorter appointments, and impersonality.
“I’m used to it being very personal and one-on-one,” says Mercer. “Now I go to an appointment, and it’s like, ‘What’s your name?’ ”
Adult health care providers expect patients to be independent. There is no handholding, no deferring to parents, no reminders to keep appointments. You are expected to be an expert on your condition and the primary advocate for your health. Gone are the days when you could lean on others to fill in the details about your medications, therapies, and equipment needs.
In other words, after you blow out those 18 candles, you move out of a cozy, full-service medical home and into a confusing, overcrowded medical maze.
“People become very comfortable at CHEO because everything is here,” says Diane Gregoire, who became familiar with Mercer during her years as coordinator of spina bifida care at the hospital. “They don’t always realize they will be leaving at 18. You can get so overwhelmed and busy, and all of a sudden, you’re a teenager and have to start thinking about life after CHEO.”
Like other children’s hospitals across Canada, CHEO is striving to ensure that transfer to adult care is not merely an administrative event but, rather, a carefully planned transition. The goal of transition programs, which are growing in number and scope every year, is to facilitate continuous and coordinated care between the pediatric and adult health care systems.
A good transition can help young adults with complex medical conditions enjoy a greater quality of life and function better socially, academically, and professionally. A poor transition, however, can lead to anxiety, complications, deteriorating health and, in some cases, disappearance from the health care system altogether.
Lost to follow-up
If you talk to experts in the field of transitioning to adult health care, you’ll hear one phrase time and again: lost to follow-up. What that refers to, in layman’s terms, is when someone leaves a pediatric setting and doesn’t see a doctor for a year or more. Once removed from the familiar and reliable structure of their childhood medical homes, some young people simply disengage.
“Sometimes they never make it to the other side and re-engage with the health care system only at a time of crisis,” says Dr. Khush Amaria, team lead for the Good 2 Go transition program at The Hospital for Sick Children (SickKids) in Toronto. “They show up in an emergency room, and nobody knows their health history.”
One study often cited as an example of this phenomenon followed 360 former SickKids’ patients between the ages of 19 and 21 with complex congenital heart defects. Slightly fewer than half of these young adults made their recommended annual follow-up visits to a specialized adult clinic, despite being at risk of complications such as arrhythmias and premature death. The study, published in 2004, found that more than a quarter of the patients hadn’t attended a single cardiac appointment since turning 18.
It is also common for newly independent young adults to get sloppy with their medication. Perhaps the drugs cause weight gain or acne, and the desire to make a good first impression at college or a new job sways sound judgment. Or it could be forgetfulness or indifference. Whatever the reason, the consequences of poor adherence to medication can be severe, depending on a person’s condition.
The health of young people with HIV, for example, can go south quickly if they interrupt antiretroviral therapy. Recipients of donated organs put themselves at risk if they skip their anti-rejection drugs. There isn’t an abundance of robust research in this area, but one 2000 British study of young people with transplanted kidneys did have troubling results. For eight of the 20 patients in the study, the donated organs failed within three years of transfer to an adult transplant unit.
Why would someone with a serious medical condition walk away from the health care system or stop taking their medication? Their health — their very lives — could be at stake. Well, it just so happens that the age when people transfer between health systems coincides with the peak period of risk-taking and experimentation in their lives.
Compared with adolescents, young adults are more likely to binge on alcohol, abuse drugs, or participate in risky sexual behaviour. It is a time of seeking new sensations, of pushing limits, of challenging rules. So perhaps it shouldn’t be a complete surprise that — after a lifetime of appointments, procedures, and pills — some young adults balk at the strict regime they had little choice but to follow when their parents were in charge.
“You have this period when people are already at higher risk of harm. Then you have young people with chronic illnesses, some who may have been sheltered all their lives. Now they have this blast of freedom, so they may stop taking their medication or take it erratically,” says Dr. Lorraine Bell, director of pediatric transition to adult health care at Montreal Children’s Hospital. “It could be because no one is watching, or it could be overt rebellion.”
Other factors can contribute to a less than stellar transition to the adult system. Young adults are a mobile bunch, and finding doctors in a new town can be challenging. People in their late teens and early 20s often struggle financially, making it difficult to pay for medication not covered under insurance or other costs related to their care. Furthermore, a busy or inflexible schedule at university or work limits their freedom to book and attend medical appointments.
However, the greatest challenge to planning and executing better transitions just might be getting all four parties that should be involved to work together.
The road to independence
When Sarah Mercer first entered preschool, her mother had to visit often to insert a catheter into her bladder. Lack of bladder control is a common complication of spina bifida. But for Mercer, depending on someone else to help her use the bathroom just didn’t cut it. “When I was four years old, I started catheterizing myself,” says Mercer, laughing at the memory. “I wanted to be in control.”
Mercer’s independent streak will serve her well in the adult health care system. Taking ownership of your health is vital to a successful transition. Unfortunately, not all 18-year-olds are prepared for that responsibility, says Deborah Thul, who runs the Well on Your Way adolescent transition program at Alberta Children’s Hospital in Calgary.
Thul says current research indicates that brain development continues for young adults into their 20s, so some may not have mastered the developmental skills needed to take on full responsibility for managing their own health care by their 18th birthday.
That is why plans for better transitions must include contributions from parents and medical providers from both the pediatric and adult systems. Of course, that is easier said than done.
One of the biggest challenges to getting parents fully onboard is their reluctance to let go. Many parents are overprotective of their children — even more so when those children have serious medical conditions. It is only natural that mothers and fathers accustomed to managing one crisis after another would struggle to pull back, think long-term, and see the sons and daughters they’ve accompanied to countless medical appointments as having the potential to live fulfilling, independent adult lives.
Mercer is fortunate that her mother, Laura Brown, has always stressed the importance of resilience and independence. That meant not using her condition as an excuse to fall behind in school and finding a part-time job when she turned 16, as well as going to the hospital only when absolutely necessary and returning home as quickly as possible. It meant not regarding life as a series of medical emergencies.
“The thing that was important for me was for Sarah not to see herself in the role of the sick person. She is more than her condition. Sarah has a chronic condition, and she needed to learn to live with it. That means living with pain, with a wheelchair, and with surgeries,” says Brown, who works in vocational rehabilitation to help people with disabilities find jobs. “I want Sarah to contribute to the world in some way. The world is not going to tailor itself for her. There will always be stairs, and it’s important for her to learn how to navigate them.”
The road to independence can be rough, though, when you encounter adult medical providers who don’t understand your struggles and have neither the time nor the skills to meet your needs. Sure, there are pockets within the adult health care system that have shown interest in improving transitions for younger patients, but in general, it isn’t seen as a priority. That’s because young people represent a very small proportion of the population, and most adult hospitals have their hands full with patients who are very old and very sick. With an aging population, that isn’t going to change anytime soon.
Furthermore, doctors on the adult side aren’t always familiar with treating some chronic conditions that start in childhood. There was a time not so long ago when many children with these diseases never saw their 18th birthday. But thanks to advances in technology, pharmaceuticals, and medical therapies, most youth with spina bifida, congenital heart disease, HIV, and other chronic conditions can now expect to live well into adulthood.
“There’s a new generation of patients that didn’t exist before,” says Dr. Sandra Whitehouse, medical lead of British Columbia’s Youth Transitions initiative. “There are more adults now with cystic fibrosis than children. It used be a children’s disease.”
In the pediatric system, however, transition is considered a hot topic. Pioneers in the field began to take interest about two decades ago. Now several of the larger children’s hospitals in Canada have transition programs and coordinators. Still, despite the advances, there is plenty of room for improvement.
“Closing the gap”
Here in Ottawa, CHEO began to focus on improving the transition to adult care in 2010, when it became part of the hospital’s strategic plan. Different approaches are being tested in various departments. In a pilot project, for example, doctors in the nephrology clinic partnered with colleagues in the adult system to improve transition for patients with kidney diseases and presented suggestions to youth and their families at a workshop.
The hospital has also created educational materials, including a readiness assessment tool to assist teenagers in figuring out if they’re prepared for transition. Do they know their new doctors’ names? Do they know all their medications? Do they know which pharmacy they’ll be dealing with?
“When people turn 18, there is so much happening. They are becoming independent, graduating from high school. They may be starting a relationship or a job,” says Shaundra Ridha, director of CHEO’s transition program. “There are so many changes in their lives, and if we can be a stabilizing influence, making the unknown less scary, that’s what we aim to do.”
As a member of the hospital’s youth forum, Mercer has provided input into how to better equip young people to transfer to adult care. “In time, the transferring is going to be smoother because they are going to start it earlier and all the departments will be on the same page,” she says.
Children’s hospitals in many Canadian cities — including Toronto, Vancouver, Montreal, and Calgary — are also making progress on improving transition. Many of the programs share similar principles, such as starting the process early, as young as the age of 10, and fostering independence in patients.
Transition coordinators also stress that the time of transfer should be flexible, factoring in the youth’s cognitive development and external support systems, as well as the availability of medical care. Other popular ideas include creating individualized transition and long-term care plans with input from both pediatric and adult providers, using electronic medical records to improve communication between youth and adult systems, and providing professional health care navigators for young adults.
Many transition experts point to the Good 2 Go program in Toronto and the ON TRAC (Taking Responsibility for Adolescent/Adult Care) model in British Columbia as leaders in the field. Good 2 Go offers a wide range of services and tools, including readiness checklists, transition timelines, discussion groups for parents and teens, and MyHealth Passport — a card for young adults that lists all their conditions, medications, allergies, and other medical information. ON TRAC provides separate toolkits for youth, parents, and health care providers, focusing on topics such as self-advocacy, sexual health, financial planning, and social connections.
The British Columbia Medical Association has also lent its support to the cause, releasing a policy paper on transition called “Closing the Gap.” The paper lists a number of recommendations, including having a family doctor from birth, individualizing transition plans, tracking young people with chronic conditions after they leave the pediatric system, and developing benchmarks to gauge transition success.
What is lacking, however, is consistency across the country. There are no national standards, no official guidelines, and no established best practices. To date, efforts to improve transition are mostly based on concepts rather than evidence. For good reason: though some data exist, much speculation remains. There is a need for more empirical research to quantify how transition services are actually affecting health outcomes. Do they reduce emergency room visits? Do they reduce in-patient admissions? Do they reduce deaths?
The good news is that interest is growing among researchers in obtaining that data, and this research guides the work being done by the Canadian Association of Paediatric Health Centres, which is presently developing national pediatric guidelines for transition from pediatric to adult care. So the future looks bright.
As for Mercer’s future, that’s looking pretty good too. She has moved into an apartment and, with the help of her mother, who stays over several days a week, has learned to cook, clean, and do laundry. She schedules her doctors’ appointments and gets herself there on public transit. And she still has the job she started when she was 16 at a movie theatre in Barrhaven.
In September, she enrolled in Introduction to Music Industry Arts at Algonquin College. A singer and musician (she plays guitar, piano, and ukulele), Mercer loves almost all forms of music, from acoustic folk to rock. The tattoo on her ribs — Come as You Are, a song by Nirvana — is evidence of that passion.
It is another of Mercer’s tattoos, though, that is particularly telling. The primary message her mother taught her — that her identity is not defined by her medical condition — has evidently sunk in. Mercer knows exactly who she is, and if she ever needs a reminder, she only has to look at the five words inked on her right forearm: To Thine Ownself Be True.