Patient transitions: from paediatric to adult care
Less than a generation ago infants born with a chronic disease rarely lived into adulthood.
Fast forward 20 years, and not only are children with conditions such as cystic fibrosis and congenital heart defects living well into adulthood, their quality of life has also improved and some are having families of their own.
Advances in medical care, medications and technology have made a world of difference to so many lives.
The Children’s Hospital at London Health Sciences Centre (LHSC) - as a ‘hospital within a hospital - is in an exceptional position to see this progress unfold.
Babies born with a chronic illness at LHSC’s Victoria Hospital receive their specialized care at LHSC’s Children’s Hospital and then can go through their transition to adult care at LHSC.
In addition, the transition from paediatric to adult care is unique to the patient. There is no one-size-fits-all model of care suitable for all youth during the transition years.
System-wide there are three models most commonly used to transition the patients:
- Begin the introduction of adult care in early teen years in collaboration with the adult clinics
- Clinics co-run by paediatric and adult health care providers
- Paediatric providers preparing patients for the transition
At LHSC’s Children’s Hospital we have examples of each. This is an evolving process and we are working towards a system that facilitates smooth transitions, says Dr. Michael Rieder, Chair/Chief of Paediatrics at Children’s Hospital.
“Our mandate at LHSC’s Children’s Hospital is regional and provincial, and our outreach is so vast, so rich with primary care paediatricians and the regional hospitals,” says Dr. Rieder. “A positive partnership in the system exists and when we work together to develop smooth processes for youth transitioning to adult care, we are ideally situated to be system exemplars to achieve this.”
Transitions for patients with congenital heart defects
When we talked about congenital heart defects (CHD) in the early 2000s, we were still talking about a paediatric population, says Liz Burrill, Nurse Practitioner, Paediatric Cardiology Clinic.
“Now adult CHD patients outnumber paediatric patients, and at this point the majority of the adults are in their 20s and 30s.”
Surgical techniques have advanced significantly in the last 20 years, and surgeons are now able to fix some aspects of the heart and improve circulation, so patients experience a higher quality of life as well.
At LHSC, a baby born with CHD has a cardiologist who follows them until they are 18 years old.
“At 15 or so we start working on the transitions with the patients. We talk to them about what they are doing after high school, how they handle the temptations of drugs, alcohol and smoking and, for girls, reproductive choices,” says Burrill. “Their transition plan is then based on this type of information.”
Burrill sees the patient at the beginning of their clinic visit to talk about the transition and every four months meets with the adult cardiologists to review her patient charts. The physician whose specialty is the best fit for a particular patient then takes over their care once the patient turns 18.
The cardiologists come over from LHSC University Hospital to facilitate a familiar environment for the patients at the adult congenital heart clinic, located at Victoria Hospital.
“Those who are going to university or college outside London will get a referral to an adult cardiologist in that area. I follow up to ensure the patients are booking their appointments and seeing the specialist,” says Burrill.
While the transition program has been in place since 1992 - before which each cardiologist was responsible for transitioning their own patients - Burrill sees room for expanding the transition program.
Some hospitals, for example, have group sessions set up for the patients which give them a chance to talk about what things they are worried about, how they can manage changes, and it provides an opportunity to talk and exchange ideas with their peers.
Cystic Fibrosis patient transitions
In 2009, the paediatric cystic fibrosis (CF) clinic began to gather information for its transition program.
“There was a lot of talk about transitions at that time and the need for teens to become more independent in their care to prepare them for adult care,” recalls Jennifer Itterman, Nurse Case Manager.
“We looked at what other clinics in Canada and the United States were doing and took bits and pieces and came up with our own process in collaboration with the adult nurse case manager, and paediatric and adult social workers.”
The transition process for individuals with CF begins when they are about 14 years old. Parents and children each receive a letter that describes what the transition program is all about, and how parents can help empower their child to become more independent by, for example, managing their own prescriptions and appointments.
“What really was brought to the forefront at that time was that we did all the teaching with the parents, but the children often didn’t know all the pieces. We are now directly teaching the patients to look after themselves and become more independent in terms of managing cystic fibrosis,” says Itterman.
The key piece of the transition program is a four part questionnaire which focuses on their knowledge of CF, taking care of their health, managing their health care, and healthy living.
“The patients fill out the questionnaire once a year until they are 20 years old. Their transition doesn’t stop when they reach the adult program,” says Itterman.
“As the young adults are taking on their own appointments and communication with the CF program, one of our challenges now is how to best connect with them. Their preference is not to phone or e-mail, but to text,” says Itterman.
The focus on transition for CF patients is also on their future.
“The medications and technology are so much better now. In 20 years there might be a cure or it might just be the management of the medication side effect,” says Erin Fleischer, Nurse Practitioner Paediatrics, Division of Respiratory Medicine. “It is really important that we encourage the youth to look after their lungs so we can take advantage of the advances of the future.”
Transitions unique for complex care patients
Transitioning paediatric complex care patients to adult care is most often a process of orientating the parents to the adult care environment.
“Our complex care patients are medically fragile, technology-dependent and often non-verbal, and as each child has different care needs, so does each child have unique transition needs,” says Danielle Heibein, Nurse Practitioner.
Paediatric complex care patients don’t fit into any specific care group and may be seeing as many as nine practitioners for their different medical needs.
Once the patient turns 18, their entire care team at the hospital will change and they will begin to see adult specialists.
“The beauty of being a hospital within a hospital is that all the paediatric documentation is online and the adult care providers can easily access this,” says Heibein.
The transition process for these patients usually begins after they turn 17 years old, although planning can begin earlier if requested by parents. The parents will receive a transition readiness kit along with an appointment with Heibein.
“During the appointment we review the transition kit and talk about everything from schooling in the years ahead to where they will be living throughout their adult years. And we talk about their fears,” says Heibein. “Then we come up with a transition plan together.”
The challenges of transitioning complex care patients go beyond the walls of the hospital, and Heibein and her colleagues work with the parents and the patients to help them navigate the adult care world.
This can include everything from guidance in filling out the documentation for adult support programs and provincial funding, to setting their child up with a bank account.
“Many patients can’t sign their name due to their physical disability. Yet, they will need to provide a signature to open a bank account in order to receive funding once they are an adult,” says Heibein. “So we encourage parents to start that process well before their child becomes an adult.”
As Heibein says, the parents are a big focus in the transition process and we want to ensure they feel well supported.