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Turning 18 marks the start of a risky period for young people with chronic health conditions. 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.
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. But her left knee had other plans, opting to fracture rather than cooperate.
"That's when I began using my wheelchair," says Sarah. "I started walking again later, but I kept falling and breaking my bones."
You might think that a person who incurs serious injury merely from rising off a floor probably has some underlying medical issues. Yeah, you could say that.
Sarah has spina bifida, scoliosis, osteoporosis and a blood-clotting disorder called factor 5 Leiden. She was born with clubbed 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, Sarah'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 — Sarah is on a first-name basis with people in many departments.
Though the thought of yet another surgery doesn't faze Sarah in the least, there was 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 Sarah. "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."
Sarah is hardly the only young person with a chronic disease who 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.
The adult health care system they enter, on the other hand, is fragmented and difficult to navigate, particularly for those who require the services of many medical providers. Someone like Sarah, for instance, will have to visit multiple locations across the city. The adult system is also bloated with elderly patients, who outnumber young adults by an ocean-wide margin. Welcome to waiting lists, shorter appointments and anonymity.
"I'm used to it being very personal and one-on-one," says Sarah. "Now, I go to an appointment and it's like, 'What's your name?'"
Adult health providers expect patients to be independent. There is no hand-holding, 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 cosy, 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 Sarah during her years as the 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 to 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.
If you talk to experts in 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, the team lead for the Good2Go 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. Less 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 judgement. Or it could be forgetfulness, indifference, any number of things. 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 British study of young people with transplanted kidneys did have troubling results. For eight of the 20 patients in the study, published in 2000, 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 to 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, the 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."
There are other factors that 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. A busy or inflexible schedule at university or work limits freedom to book and attend medical appointments.
The greatest challenge to planning and executing better transitions, however, just might be getting all four parties that should be involved to work together.
When Sarah 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 Sarah, depending on someone else to use the bathroom just didn't cut it. "When I was four years old, I started catheterizing myself," says Sarah, laughing at the memory. "I wanted to be in control."
Sarah'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 everyone is mature enough at 18 to realize that.
"One of the barriers to transition is adolescent development. These are not little children, but they are not yet adults who are completely ready to take on this responsibility," says Deborah Thul, who runs the Well on Your Way transition program at Alberta Children's Hospital in Calgary. "The brain continues to develop until you are 28 or even 30, so 18 years old is a rather arbitrary cutoff. Some will be much more ready than others."
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.
The biggest challenge to getting parents fully onboard is their reluctance to let go. Many parents today 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, to think long-term, to see the sons and daughters they've accompanied to countless medical appointments as having the potential to live fulfilling, independent adult lives.
Sarah 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. That meant finding a part-time job when she turned 16. That meant going to the hospital only when absolutely necessary, returning home as quickly as possible, and 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, helping 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 not always about yelling for a ramp."
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 skills to meet your needs. Sure, there are pockets within the adult health care system that have shown interest in improving transition for younger patients, but it isn't seen as a major priority. 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 any time soon.
Furthermore, doctors on the adult side aren't always comfortable treating chronic conditions that start in childhood. There was a time not so long ago, after all, when many children with these diseases never saw their 18th birthdays. 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, the medical lead of British Columbia's Youth Transitions Initiative. "There are more adults now with cystic fibrosis than children. It used to be a children's disease."
In the pediatric system, however, transition is considered a hot topic. Pioneers in the field first began to take interest about two decades ago. Now most major children's hospitals in Canada have transition programs and coordinators. Still, despite the advances, there is plenty of room for improvement.
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 they presented their ideas to youth and family 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, who manages 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, Sarah has also 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 of Canada's 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 age 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. Other popular ideas include creating long-term care plans with input from both pediatric and adult providers, improving communication between youth and adult systems using electronic medical records, and providing professional health care navigators for young adults.
Many transition experts point to the Good2Go program in Toronto and the ON TRAC (Taking Responsibility for Adolescent/Adult Care) model in British Columbia as leaders in the field. Good2Go 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 making 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, no established best practices. To date, efforts to improve transition are based on concepts rather than evidence. For good reason: that evidence doesn't exist. There is a need for more empirical research to measure how transition services are affecting health outcomes. Do they reduce emergency room visits? Do they reduce inpatient admissions? Do they reduce deaths?
The good news is that interest is growing among researchers in obtaining that data. So the future looks bright.
As for Sarah Mercer's future, that's looking pretty good too. She 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 uses public transit to attend them. 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), Sarah loves most 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 Sarah'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. Sarah 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."
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