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About Sickkids
About SickKids

August 18, 2014

Inaugural Sickle Cell/Thalassemia transition clinic helps patients prepare for adult care

By Mackenzie Hill-Strathy

The lifespan for individuals with Sickle Cell Disease (SCD) has increased dramatically in the past 50 years due to medical advances, meaning that patients with SCD can expect to survive well into adulthood.

Babies are tested for the blood disorders SCD and Thalassemia at birth, and a considerable number receive treatment at The Hospital for Sick Children (SickKids) until they are 18, at which point they have to transition to an adult hospital to continue receiving care. 

Transition Clinic

The highest rate of re-hospitalization among SCD patients occurs in the 18-30 age bracket, a population that includes those who have recently transitioned from paediatric to adult care.

The transition process can be difficult, as adolescents have to make their own health-care decisions for the first time. To ease the transfer, SickKids and Toronto General Hospital (TGH) have launched a monthly Sickle Cell/Thalassemia transition clinic. Good 2 Go, a pre-existing transition program at SickKids, provides support during the clinic due to their expertise. The team’s goal for a successful transition is to ensure that adolescents feel prepared to enter a new system of care, attend appointments after they transition to TGH, and feel confident in managing their own health condition with less reliance on their parents.

 “Moving from paediatric to adult care is a significant milestone for our teens and we are thrilled to be initiating this monthly clinic,” said Brooke Allemang, Health Transition Specialist in the Sickle Cell and Thalassemia Programs. “Many of these patients have been with the same doctor their entire lives; we want to remove all hurdles so they feel comfortable crossing the street and receiving treatment in a new environment at Toronto General Hospital.”

SickKids and TGH collaborated to create the role of Transition Specialist in the Sickle Cell & Thalassemia Programs to improve the transition between the two hospitals, help teens with SCD find their way in the process, and be more empowered to take control of their health condition. Allemang joined the program July 7.

The first clinic was held Aug. 12 with education, resources and support related to the transition process. The six teens who attended the clinic completed a readiness survey and created a MyHealth Passport with a Transition Specialist to determine issues to discuss with the SickKids and TGH medical teams.  Later they met with the TGH Red Blood Cell Disorders Clinic staff physician, took a tour of the hospital with the TGH nurse practitioner, and scheduled their first adult appointment. At the end of the clinic, the teens were brought back to SickKids for a graduation ceremony, where they received a certificate marking the completion of their paediatric care.

“The transition clinic has taught me a lot about my Sickle Cell that I didn’t know before,” said Trisha, an 18-year-old patient who participated in the clinic. “The survey brought up a couple of things I hadn’t considered, so I now have a lot of questions to ask the doctor. Before I knew about the program, I thought I was going to be sent a letter from another hospital and would just show up and probably get lost, so seeing where I will be going will be really helpful.”

Although treatments for SCD remain similar, the discussions surrounding the condition change as patients move from paediatric to adult care. Methods of contraception, fertility, genetics, and moving away from home are all issues that need to be considered for their impact on SCD and medication. The increased involvement of a social worker is often necessary during this transitional time.