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Dr. Temeia Martin talks about how her team identified the transition period as a major obstacle for patients with sickle cell disease and what her task force has implemented as a solution.
The awareness around the numerous challenges that are faced by individuals living with sickle cell disease (SCD) is continuing to spread. With World Sickle Cell Day, June 19th, serving as a day to honor and acknowledge the plight of the "sickle cell warriors" and push for more progress, it's also a time to celebrate the advances made clinically, legislatively, and socially.
One of the gaps in care that persists in sickle cell disease is the transitionary period a patient goes through from pediatric to adult care. Patients are diagnosed young and often spend their entire childhood and adolescence seeing the same doctors for treatment, so when it becomes time to shift the routine they're accustomed to, they experience a multitude of obstacles.
"The challenges are that they all sudden get dumped into the adult world, but they still have pediatric behaviors." Expert Temeia Martin, MD, said. "And that's not to be insulting, it's just that if we don't impart them with the tools and introduce them to the adult community, they don't do well and the transition is hard. They're resistant and they don't have the self management skills they need to survive in the adult world."
Temeia Martin teaches internal medicine and psychiatry at the Medical University of South Caroline (MUSC) as an assistant professor. In addtion to that she serves as the medical director of the Sickle Cell Patient Centered Medical Home (PCMH).
In an interview with HCPLive, Martin spoke specifically about how she and professionals at MUSC identified the transition period as something that patients struggled with and what their working solution has been.
"We've noticed transitions really start very young," she said. "We talked about the steps of transitioning, starting as early as 12, 13 [years of age], and what things need to be done to make that patient successful."
The team of professionals developed a multidisciplinary task force in order to standardize the process for patients shifting from pediatric to adult treatment. In addition to educating the patient about their own disease and related areas like sexual health, Martin said they also aimed to train patients to become a more proactive member of their own care before being fully admitted to Martin's adult sickle cell center.
This could mean helping the patient speak for themselves during appointments, or managing their own refills and appointment schedules. She explained that the team developed a type of "blueprint" as a shared document to keep track of the various things that have been done with each patient and what still needed to be addressed.
"These really simple things can have a huge impact," Martin said.
One of the next steps to incorporate into the transitionary model is to have the patient meet or start to see their adult provider before they finish with their pediatric provider.
Martin emphasized the positive impact that this step could provide, because a gradual introduction is less of shock when a patient meets an entirely new person who's now in charge of their treatment.
Having the adult provider being able to collaborate for a time with the pediatrician prior to completing the transition has been successful in other programs throughout the country.
"Collaborative efforts have been with my national mentor, Wally Smith from UVA. He's just helped a lot–having done this for decades, teaching us about how their program works. I often speak with Dr. Ify [Osunkwo], who recently left the North Carolina area," Martin said. "And, in the very beginning, we collaborated with Emory–they had a really well defined program in Atlanta, and we were just kind of sharing ideas."
"For the most part," she continued, "it seems as though we're approaching things correctly, but it just takes a lot of time to get things to be solid and in place on a permanent basis."