A Conversation with Mariah J. Scott –
Medical Student Mentors for Young Adults with Sickle Cell Disease: Impact on Mentors
Sick Cells sat down with Mariah Jacqueline Scott, MS, MPH–sickle cell warrior and former Sick Cells Research Coordinator–to discuss a newly published research article she contributed to as a part of her doctoral program in Prevention Science at Rutgers University. The study, published by SAGE Publications in the Journal of Medical Education and Curricular Development, explores how medical students are impacted by serving as similar-aged “peer” mentors to young adults with sickle cell disease during the transition from pediatric to adult care.
Mariah J Scott with daughter Autumn
Sick Cells: Hi, Mariah! Thank you for taking the time to discuss your research with us. Can you please share a bit more on your background?
Mariah: Of course! My name is Mariah Scott and I am a 33-year-old sickle cell warrior from New Jersey with hemoglobin SS. I learned about Sick Cells from the Ambassador Program and then I joined the team as a research coordinator. During my time, I became interested in Medicaid research, so my role combined research and the success of Medicaid in the sickle cell disease (SCD) community. Today, I am getting my PhD at Rutgers University in Prevention Science – it’s a combination of public health, public affairs and psychology – and I feel like that’s really what sickle cell is right now. A lot of groups, different disciplines and pieces coming together to try to find solutions for sickle cell and have more policies developed. And I have a three-year-old daughter, Autumn, who has sickle cell trait.
Sick Cells: Prevention Science sounds like everything the SCD community needs right now. How did you get involved in this project and decide on a topic?
Mariah: I became interested after I saw a flyer for Dr. Adrienne S. Viola’s dissertation presentation which explored sickle cell disease and transition as it’s so hard to find PhD research on sickle cell. Transition has always been my interest in sickle cell because my experience with pediatric to adult transition was really alarming.
Sick Cells: Can you tell us more about that transition period?
Mariah: I was a sophomore in college and I was getting ready to have my wisdom teeth taken out. The dentist gave me Prednisone and didn’t do his research on how steroids can cause a crisis – so I had a life threatening crisis, so much so I passed out in the E.R. from waiting so long in pain. When I finally woke up, I was on the hematology floor. And I woke up to my pediatric hematologist at my bedside, and it was just like, “hey, here you go. You’re on the outside. Have fun.” There was no talk about looking for an adult doctor or transitioning to adult care in general. And, unfortunately, to this date, we’re still seeing a lot of warriors dying during that stage. So that’s something that was always near and dear to me and so alarming. That’s why my research is really interested in transition.
Sick Cells: How did this personal experience affect this topic?
Mariah: We’re noticing a lot of doctors don’t learn about sickle cell until they get to residency. Or maybe they see one patient during clinicals in the ER so we decided to work with the medical school to do a program where the medical students are mentors and help warriors transition from adult care for a mentorship type of intervention.
Sick Cells: Did you share your personal experience with your team?
Mariah: Yes, I shared it with them. What was really exciting about this project was that we developed a panel of experts. Our team included a pediatric hematologist, an adult hematologist, and individuals who could share their lived experiences—myself included. Another warrior on the pediatric side also contributed their perspective. Together, we created a manual for medical students, going beyond textbook knowledge. We wanted them to understand not just the clinical aspects but also the real-life experiences that patients face—things like why certain terminology, such as “sickler” or “frequent flyer,” might not be appropriate. We collaborated on a guide for mentors to ensure they could better support students in understanding both the science and the human side of care.
Sick Cells: That’s great that you could create something tangible from your research that the medical students can use in the future. What else can you tell us about the study?
Mariah: We recruited about nine students and asked them about their future plans, including which residency and specialty they were interested in pursuing. To reach potential participants, we put up flyers at the medical school and also visited their classes to introduce the opportunity. We also set up a WhatsApp separately for the warriors and the medical students so if they ever wanted to reach out to the mentors and say, “hey, I’m really frustrated” or “I’m having depression because I just got discharged from the hospital,” they can reach out to them.
Sick Cells: What did they discuss amongst each other?
Mariah: They had scheduled Zoom meetings about once a month to check in. These sessions provided a space to discuss any challenges they were facing, such as self efficacy, navigating insurance, or how school was going. For those planning to attend college, they could also talk about reaching out to the Office of Disabilities for support. Each month focused on a specific topic. At the same time, participants could freely text medical students if they had questions or wanted to talk about anything.
Sick Cells: How did this impact the study?
Mariah: We did a pre- and post-survey on the knowledge of sickle cell. We all worked together to develop the survey because we didn’t want it to focus solely on medical knowledge, like identifying the four main types of sickle cell. Instead, we aimed to include questions about the social determinants of health, examining factors like access to care and the broader challenges patients face. Before the intervention began, medical students took the survey, and the average score was around 79%. After the intervention that survey increased to like 92%.
Sick Cells: Wow! Those results really stand out.
Mariah: Yes, it shows that the students just need the exposure. I learned a lot during this study that I was shocked to hear regarding what the students didn’t know about sickle cell but I was happy to be able to capture that.
Sick Cells: Can you please share more on why you, personally, think this research is important?
Mariah: It really highlights how little medical students know about sickle cell disease. I always wanted to be in research and medicine, and at one point, I did want to go to medical school. I remember looking at those textbooks and thinking, “why is there only one page on sickle cell out of a thousand page textbook, you know?” “How do you become a successful doctor and learn about sickle cell with 1 or 2 pages?” We still have a lot of work to do.
Sick Cells: Are you inspired to maybe do other topics similar to this based on what you found?
Mariah: Yes, definitely. Especially regarding how we can better teach self-advocacy during transition but the main thing that really is sticking with me is health-related quality of life, which I’m taking to my dissertation. It’s basically looking at how the quality of life during the transition period is impacted. Asking questions like “how is your pain being managed at home?” “Are you depressed?” “Once you get out of a crisis, how do you manage that?” and “how do you go back to school or work?”
Sick Cells: That’s great and definitely something to look forward to in your research. Our last question is one we’ve asked often in the past: What gives you hope for the future of this type of research for sickle cell?
Mariah J Scott, MS, MPH
Mariah: I’m super excited for the future of sickle cell. Suddenly, sickle cell has been popular and people are wondering what’s going on and seeing it in the news. Specifically, coming out of this study, I’m focusing on policies in New Jersey as we’re starting to see more policies specific to sickle cell. Today, if you Google sickle cell and pediatric to adult transition, you’ll see all the bad and what went wrong – poor quality of life and high mortality. But, hopefully, with new policies and more conversations about this topic, we can finally see what’s good. And that’s why I love my program so much because that’s what we do – we prevent the bad outcomes.
Mariah’s work shows the growing recognition of SCD in medical education. By continuing this research and shaping policies, we can improve patient outcomes during this critical transition. The full research article is available here.
Thank you, Mariah, for speaking with Sick Cells. We look forward to your future research.
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Blog Published March 2025