Growing up with type 1 diabetes
Lawson researchers are finding ways to ease the transition from paediatric to adult care
Nicole Pelcz was 13 years old and had just started grade nine when she found out she had type 1 diabetes.
“I kept feeling sick at school and eventually my mom said it looked like I’d lost quite a bit of weight. She told me she could see it in my face. So I went and weighed myself, and I had lost almost 20 pounds. I went to the doctor the next day and was diagnosed with diabetes,” she says.
Nicole Pelcz a few months after she was diagnosed with type 1 diabetes at 13 years old.
Type 1 diabetes occurs when the body attacks and destroys cells in the pancreas that make insulin. Our body needs insulin to use the sugar found in many foods for energy. Without it, sugar builds up in the blood, which can damage organs, blood vessels and nerves. It is a chronic disease that requires a high level of patient self-management and engagement. Blood glucose (sugar) levels need to be monitored throughout the day and insulin must be delivered through daily injections or an insulin pump. Diet, exercise, stress or other factors can impact how much insulin is needed.
Although type 1 diabetes can occur later in life, it is most often seen in young patients. Parents of children and young adults with diabetes need to have a very active role in the management of their child’s condition. But what happens when children grow up, leave home for school or work, and have to manage their diabetes independently?
“Unfortunately, 30 per cent of young adults drop out of medical care when they transition from paediatric to adult care. This impacts long-term health,” says Dr. Cheril Clarson, associate scientist at Children’s Health Research Institute, a program of Lawson, and a paediatric endocrinologist at Children’s Hospital at London Health Sciences Centre (LHSC). “Sometimes our patients transfer to adult care and then we hear a year or two later that they’re not being seen. Often their diabetic control deteriorates and this can lead to increased diabetes-related hospital admissions and acceleration of diabetic complications. It’s been well-recognized for decades that transition of care is a huge problem.”
Dr. Tamara Spaic, Lawson associate scientist and adult endocrinologist at St. Joseph’s Health Care London (St. Joseph’s), has always shared Dr. Clarson’s concerns about transition of care for young adult patients.
“Dr. Clarson and I have a close collaborative relationship. I became interested in transition when I spent time at Children’s Hospital during my fellowship training. When I established my own practice in diabetes and saw some of the difficulties that young adults who had transitioned from paediatric care were experiencing, I realized that we needed to change the care model to improve the transition process,” says Dr. Spaic.
In 2012, Drs. Clarson and Spaic launched a multi-centre randomized controlled trial with the goal of improving the transition from paediatric to adult care through a structured transition program.
The program provided additional support to patients as they began adult care and included having a Certified Diabetes Educator act as a dedicated transition coordinator. The coordinator attended the patients’ clinic visits, and was accessible between visits by email, text or phone to problem solve specific diabetes care issues, and to help patients adjust to care at a new facility. Nicole was one of Dr. Clarson’s patients and heard about the study from her care team. She enrolled when she was 19 years old and transitioning from paediatric care at Children’s Hospital to adult care at St. Joseph’s.
“At the time I was just starting university. I was moving away from home and would be living on my own. Before that, my mom had always come with me to my appointments but I knew that she wasn’t going to be coming with me anymore. I felt like it would be helpful to have someone there to guide me through the transition,” says Nicole.
“When you have type 1 diabetes you have to think about it throughout the day and in any circumstance. Your life is not that spontaneous and this is not easy for young adults. They’re trying to gain their own independence and figure out who they are as a person: their personality, sexuality, friends, what they’re going to be in life. These things seem so much more important than thinking about their health every day,” explains Dr. Spaic. “On top of all this, hormonal changes during this time period can make blood sugar harder to control.”
Another factor that makes this transition period difficult is the difference between paediatric and adult care.
“Paediatric care is very family-oriented and you meet with the whole care team at the same appointment, including an endocrinologist, nurse, dietician and social worker. Adult care requires more independence as the patient schedules how often they want to see their care team and makes separate appointments to see their endocrinologist, nurse, dietician and social worker,” says Dr. Clarson.
The structured transition program was successful in helping patients meet the challenges of managing diabetes as a young adult. Drs. Spaic and Clarson found that the program led to better clinic attendance, and patients reported being more satisfied with their care and felt that the emotional burden of their diabetes had decreased.
The structured transition program Dr. Cheril Clarson (left) and Dr. Tamara Spaic (right) developed led to improved clinic attendance and satisfaction with care among young adult patients with type 1 diabetes. Nicole Pelcz (centre) was one of the patients enrolled in the study.
“Having my transition coordinator attend my appointments with me made me feel more comfortable talking to my new healthcare team. Following appointments, as well as any other time during the transition, she answered all the questions I had,” says Nicole.
The study enrolled 205 young adults with type 1 diabetes between the ages of 17 and 20. Patients were recruited from three paediatric centres and their care was transitioned to three adult centres. The trial was a multi-centre partnership among Children’s Hospital; St. Joseph’s; Children’s Hospital of Eastern Ontario; The Ottawa Hospital and Trillium Health Partners in Mississauga.
Participants were randomly assigned to two groups, with 104 patients in the structured transition program and 101 patients receiving standard care. Patients were seen in the paediatric care setting for six months and then transferred to adult care, where they continued with either the transition program or standard care for one year.
“Our hope is that support from a transition coordinator will become a standard of care for young adults with type 1 diabetes during the transition from paediatric to adult care. A similar model could also be considered for other chronic childhood conditions, such as cystic fibrosis, congenital heart disease and inflammatory bowel disease,” says Dr. Spaic.
Nicole is now 23 years old and a recent graduate of the Food and Nutrition program at Brescia University College, an affiliate of Western University. She is working towards becoming a dietician and a Certified Diabetes Educator like her transition coordinator so that she can help other type 1 diabetes patients and ensure they have a positive care experience.
TYPE 1 VS. TYPE 2 DIABETES
| Type 1 | Type 2 |
|---|---|
| Occurs when the body attacks and destroys cells in the pancreas that make insulin | Occurs when the pancreas does not produce enough insulin or the body becomes resistant to insulin |
| Chronic illness | Chronic illness |
| Patients are dependent on insulin for survival | Patients may be treated with lifestyle changes and oral medication, and some may require insulin but not all |
| No potential for remission | Some chance of remission |
| Risk of long-term complications | Risk of long-term complications |
| Some genetic disposition |
Stronger genetic link |
Why is the transition from paediatric to adult care challenging for patients with type 1 diabetes?
- The transition coincides with multiple other changes in the lives of young adults, including starting post-secondary education.
- It is a time when they are becoming more independent and their parents may not be monitoring their care as closely.
- Paediatric and adult care are different.
- Paediatric care is family-oriented and patients meet with their whole care team at the same appointment. Adult care requires more independence as the patient schedules how often they want to see their care team and makes separate appointments to see eachmember of the team.
- Learn more about the study in this CTV News London segment:
Dr. Cheril Clarson is a part of Children’s Health Research Institute, a research program of Lawson, and the Diabetes & Endocrinology research program at Lawson. She is a professor in the Department of Paediatrics, Schulich School of Medicine & Dentistry at Western University.
Dr. Tamara Spaic is a part of the Diabetes & Endocrinology research program at Lawson. She is an assistant professor in the Department of Medicine, Schulich School of Medicine & Dentistry at Western University.