Empowering teens to take the reins of their health care

When you first meet Oshawnie Ralph you are struck by her vibrancy and care free attitude. You would never guess that she has been a SickKids patient since she was eight years old; frequenting the hospital at least twice a year for regular appointments with the Sickle Cell Clinic for treatment of sickle cell disease (SCD).

Today Oshawnie is an independent 18 year old beginning her first year at York University where she will study linguistics. She is competent and prepared to take her health care into her own hands thanks to the Sickle Cell/Thalassemia transition clinic.

Transitioning to adult care can be a challenging process, as adolescents have to manage their health condition for the first time without the reliance of their parents.

The transition process for patients with SCD begins much earlier than for those with other medical conditions. Brooke Allemang, Transition Navigator in the Sickle Cell and Thalassemia Programs at SickKids, began working with Oshawnie when she was 16. For the past two years, Allemang attended Oshawnie’s regular appointments to discuss how her health care would change once she turned 18.

“I have been at SickKids for 10 years of my life, every time I visit I know exactly who I am going to see and where I am going,” says Oshawnie. “Now it will definitely take time to adjust to a new environment, but I feel well-prepared and it is comforting to know that I have Brooke to help me navigate adult care.”

SickKids and Toronto General Hospital (TGH) collaborated on the establishment of the Sickle Cell/Thalassemia transition clinic in August 2014 as an effort to confront the increasing rate of re-hospitalization among SCD patients in the 18 to 30 age bracket. Since onset of the transition clinic two years ago, over 90 patients have been through the transition clinic and transferred to TGH.

It has been shown that transition programs like this result in more seamless transitions from paediatric to adult care, better engagement with the adult health-care system and improved self-management skills for adolescents and young adults with chronic conditions.

Oshawnie recently attended the transition clinic where she marked the completion of her paediatric care with a graduation certificate from SickKids. In addition to saying goodbye to her health-care team at SickKids, she went across the street to meet the TGH Red Blood Cell Disorders Clinic staff, take a tour of TGH with a nurse practitioner and book her first adult appointment.

“It has been a privilege to be a part of this program and to watch these adolescents and young adults take ownership of their health and acquire the skills they’ll need to advocate for themselves in adult life,” says Allemang. "The transition program allows us to take a step back and look at the concept of transition in a holistic way.”

While the treatment for SCD stays largely the same, there are many additional considerations for SCD treatment as adolescents transfer out of paediatric care such as moving away from home, methods of contraception and fertility. Results collected from a survey distributed following the transition clinic show that 94 per cent of patients felt they received just the right amount of information about leaving SickKids.

“Brooke helped me discuss my fears and how everything would work with the adult care system,” says Oshawnie. “She made me feel so comfortable with everything and I can’t say how much I appreciate all her help.”