Joint team work smooths transition from pediatric to adult care

Thanks to advances in diagnosis and treatment, more and more children with complex chronic diseases and medical conditions survive past adulthood

At the McGill University Health Centre (MUHC), many of these young patients build strong ties with their pediatric healthcare teams. To ensure a successful transition from pediatric to adult care, they need plenty of time, support and a warm welcome in an environment that meets their special needs.

“Transition is a process and it happens on both sides. Pediatric teams must help teenagers and families prepare for the transfer, whereas adult teams must ensure they offer a warm and supportive welcome to young patients with special needs,” says Dr. Lorraine Bell, as she addresses some 20 practitioners from the Montreal Children’s Hospital (MCH-MUHC)) and the Royal Victoria Hospital (RVH-MUHC) during the first Transition to Adult Care presentation at the Glen site of the McGill University Health Centre (MUHC).

Dr. Bell, who is the director of the Pediatric Renal Transplant Program for the MUHC and the director of the Pediatric Transition to Adult Care Project at the MCH, sees many potential advantages in the recent relocation of both the MCH and the RVH to the Glen.

“When an 18-year-old patient with a complex medical history goes to a first appointment in the adult side, everything is new in so many ways. Being in a familiar environment makes the experience less stressful for them,” she says. “The proximity of the Royal Vic and the Children’s makes it easier for practitioners from both sides to see patients together and it facilitates communication and collaboration between adult and pediatric teams dealing with the same illness.”

Amayrani Oropeza

Eighteen-year-old Amayrani Oropeza, who was a patient of the MCH for the past three years, has just completed her transfer to the RVH, where she is now followed in the Young Adult Kidney Transplant Clinic by an interdisciplinary adult and pediatric team.

A few of these teams have started joint adolescent-young adult clinics in specialities such as Rheumatology, Hematology-Oncology, Congenital Heart Disease, Diabetes and Kidney Transplantation. Kidney transplant patient Amayrani Oropeza, who turned 18 last July, went through a preparatory stage before she was transferred to the RVH: she took part in two Transition Preparation Clinics at the MCH and was then introduced to her new nurse at the RVH.

“I was told things would change, and they did. My nurse at the Children’s would always remind me of my appointments,” she says. “Now, I have to take on more responsibilities. To date, I haven’t missed a single appointment, but I'm afraid I will, so I set alarms all over my cell phone.”

A long, delicate process

According to Dr. Bell, the process of preparation for the move into adult care could start when kids are as young as 12 or 13 years old.

“It takes a fair amount of time and investment on the pediatric side to help children gradually mature and to guide parents to progressively give their child more responsibility without taking unnecessary risks,” she says. “We have many transition preparation tools* to help our patients understand their illness well and to become comfortable asking questions, expressing concerns and taking care of their everyday needs. For physicians, there’s also a great deal of work involved in preparing the transition chart.”

The transition process is far from over once the transfer is complete. The challenges brought on by years living with a moderate to complex disease can have an impact on the social and psychological well-being of these patients and may make it more difficult for them to act independently.

“They’re different than a young adult who’s always been healthy and suddenly gets sick,” explains Dr. Bell. “Some milestones may be delayed – graduation, first boyfriend, first vacation without a parent, first job – so they need more support and time to trust a new team.”

In one aspect, though, these young patients are just like their peers: their brains are wired to take risks and won’t be fully mature until their mid to late 20’s.

“Teenagers and young adults have a drive to do things by impulse and may be more likely to have emotions override their judgement. The problem is that some situations may involve a bigger risk for kids who have a chronic illness.”

Breaking down barriers between pediatric and adult care

The Transition to Adult Care presentations and meetings, which are held once a month, are intended not only to inform, but also to break down barriers between healthcare teams that often have different clinical approaches and management styles.

Dale MacDonald (left) and Dr. Lorraine Bell lead the series of presentations about the transition from pediatric to adult care at the MUHC.

“When people are in the same room, there’s a dialogue,” says Dale MacDonald, MUHC transition coordinator, Pediatric to Adult Care. “Once you start discussing and looking into some of the procedures and processes, and the needs of patients and families, people start getting on the same page.”

Aligning care on the pediatric and adult sides can make a world of difference for kids with chronic conditions who are starting their adult lives. As Amayrani Oropeza sits in the waiting room moments before an appointment at the RVH, she still feels a little sad but hopeful that, with a little help from new friends at the RVH, she will adapt to her new environment.

“I feel I am well prepared for the transfer, especially because I still have Dr. Bell’s support,” she says. “But, when I come to the Glen, I always stop by the pediatric side to pay a visit to my former nurses. I will never forget the care I received at the Children’s.”

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