Jude, a TGH patient and former SickKids patient has Thalassemia Major. Her book, ‘Thalassemia: My Lifelong Companion’ touches on her experience transitioning between the two hospitals. (Photo: UHN)
During her first Thalassemia appointment at Toronto General Hospital (TGH), Jude wasn't sure where to go.
Transitioning from the Hospital for Sick Children (SickKids), Jude wasn't used to her new surroundings, new processes and the need for independence that comes with adult care.
"It's almost as if there was a step missing, a gap between SickKids and TGH," she recalls.
Bridging the gap
Having identified that missing step, TGH and SickKids are now working together to bridge the gap with a Thalassemia and Sickle Cell Disease (SCD) Transition Clinic for patients who graduate to adult care.
Launched in August 2014, the new monthly clinic will ease the transition for patients who are 18 years old -- old enough to move on from pediatric care. The second clinic will take place on September 9, 2014.
Understanding Thalassemia and SCD
Thalassemia and SCD are blood disorders that affect red blood cells in the body. Most patients see a doctor about three to four times a year, but some need monthly appointments and blood transfusions, says Dr. Richard Ward, a physician in the Department of Hematology at TGH.
"Transition is a time of high risk for most chronic diseases and SCD is no exception," he says. "The medical literature has clearly demonstrated increased mortality in adolescence from these disorders."
According to Brooke Allemang, the new Health Transition Specialist at SickKids' Sickle Cell and Thalassemia Programs, the highest rates of re-hospitalizations occur among 18-30 year olds who have recently transitioned from pediatric care to adult care.
"My job is to ensure that patients do not fall through the cracks during this vulnerable time," Allemang explains. "I provide support, education and resources to adolescents with sickle cell/thalassemia who are approaching the transition to adult care. My position will help streamline the transfer of care between hospitals."
According to Dr. Ward, this new transition clinic has been made possible by over a year of effort by team members at TGH and SickKids, including: Allemang; Colleen Johnson, a nurse practitioner in the Red Blood Cell Disorders Program at TGH; and her SickKids counterpart, Melina Cheong.
A smooth transition
Allemang splits her time between the two hospitals and accompanies transitioning patients on their first clinic visits at TGH. That way, the new surroundings and processes won't act as hurdles in a continuity of care.
During the transition clinics, patients have the opportunity to meet with adult care providers, receive specific resources for the transition and tour TGH facilities.
"By meeting the team at an early stage, there is a familiar face once the patient arrives at TGH," says Dr. Ward. "There is also an opportunity to begin building a relationship from the start. As we (the doctors from SickKids and TGH) see patients together, they also realize they aren't being abandoned."
The hope is that patients and their families will feel prepared and excited about their move from pediatric to adult care, Allemang says.
"It is often a bittersweet time for older adolescents who are experiencing multiple life transitions and are leaving behind a hospital and medical team they have come to know," she explains. "The transition clinic provides an opportunity to celebrate the milestone of graduating from SickKids and moving on to the next chapter."
Though Jude adjusted to adult care quickly, she says the new monthly clinic will help patients like her who may be unsure about the next steps.
"A transition clinic will help make patients aware of where to go, what to expect and how to prepare," she says. "We're very lucky to have a good healthcare system here, and this is just an added benefit."
For more information, please visit Blood Disorders.
