Lost in Transition, Optimizing Sickle Cell Disease Care
As part of ongoing efforts to expand sickle cell disease knowledge and to reduce health inequities, Diverse Health Hub (DHH) hosted its first Sickle Cell Health Hub Huddle with sickle cell disease experts and broadcasted to online attendees. The huddle was held in partnership with sickle cell support organizations including Kids Conquering Sickle Cell Disease Foundation, Uriel E. Owens Sickle Cell Disease Association of the Midwest, Dreamsickle Kids Foundation, and Breaking The Ssickle Cell Cycle Foundation Inc. The expert panel comprised of a Hematologist, Hematology Nurse Practitioner, and a Sickle Cell Disease Care Partner offered broad perspectives about sickle cell disease care.
During the huddle, the sickle cell disease experts Dr. Marwan Shaikh, Hematology Nurse Practitioner Maya Bloomberg, and Sickle Cell Disease Care Partner Carla Lewis spent some time focused on the transition from adolescent to adult sickle cell care. As most adolescents with sickle cell disease now survive into adulthood, it becomes more important than ever to focus on educating and preparing them for the transition into adult care. In fact, the vulnerable time period when young people transition to adult sickle cell care shows a drastic increase in use of acute care and of mortality rates, so it is absolutely vital for sickle cell providers and care partners to help guide young SCD patients into this transition. Advanced Nurse Practitioner Maya Bloomberg shared during the huddle, “There are definitely road maps, because we know this transition period, there's a spike in mortality or a spike in death rates. It's a very delicate time, and there are a lot of reasons for that.”
Transitioning Pediatric Sickle Cell Disease Patients
Examining the transition on a deeper level, the panel members discussed sickle cell disease care concerns that can arise when young people make the drastic transition from having supportive family, friends, and teachers who know about their sickle cell disease to meeting new people or even living on their own. The three vital phases of health care transition of transition preparation, transfer, and adult care integration are included in the event portion focused on SCD care transition. Some of the topics included navigating logistics like locating SCD providers for optimal care, dealing with health insurance, support methods that SCD patients may need to take over themselves, ways to guard against sickle cell pain crises, balancing life responsibilities with SCD care, sharing your health concerns with others, and the importance of empowering sickle cell disease patient education for the best care possible.
Advanced Nurse Practitioner Maya Bloomberg explained some of the topics covered, “So there are different road maps that are in place, and the thought is that you introduce different concepts at each appointment. So what's your diagnosis, what's your genome type? What do you do, what are your triggers? What do you do in the events of an emergency, what's your insurance? Do you know how to get a referral? So there are a lot of different topics that are discussed and covered using this road map to ultimately prepare patients for the best chances of succeeding in transitioning.”
Over the course of the huddle, the sickle cell disease panel covered a wide range of topics including:
How sickle cell warriors can smoothly transition to adult care
Whether sickle cell pain crises increase or decrease with age
Questions to ask when transitioning to adult sickle cell care
Whether standard of care changes for adult sickle cell warriors
How to lower risk of pain crises
Resources to keep track of SCD health information
Sickle cell disease care disparities
What sickle cell disease warriors should know before joining a clinical trial
ASH Sickle Cell Research Priorities
Hematology research is vital in finding more effective sickle cell disease treatments and treatments that help retain patient quality of life. The American Society of Hematology (ASH) has set priorities for sickle cell disease (SCD) research for the next five years. The priorities include:
Identify Predictors of Disease Severity
Optimize the Use of Existing Therapies
Develop Novel Therapies
Strengthen Curative Therapies
Enhance Pain Research
Improve Access to Evidence-Based Care Through
Innovative Healthcare Delivery Models
Determine the Effects of Quality of Care on
Quality of Life
Investment in Sickle Cell Trait Research
Watch the videos or read the transcripts from the huddle segments to gain knowledge about sickle cell disease symptoms and potential complications, adolescent versus adult SCD care, how to advocate for optimal care, sickle cell disease treatments, and SCD research and clinical trials.
In retaining editorial control, the information produced by Diverse Health Hub does not encapsulate the views of our sponsors, contributors, or collaborators.
Importantly, this information is not a substitute for, nor does it replace professional medical advice, diagnosis, or treatment. If you have any concerns or questions about your health, you should always consult with a healthcare professional.
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Huddle Panelists
Hematologist/Oncologist
Mayo Clinic Jacksonville
Family Nurse Practitioner
Sylvester Comprehensive Cancer Center
Jackson Memorial Hospital
Mother/Care Partner to Sickle Cell Disease Warrior
Founder, Kids Conquering Sickle Cell
Program Host
Public Health Scientist
Huddle Producers
Sources
Anjelica C.. Saulsberry, Jerlym S. Porter, Jane S. Hankins. Sickle Cell Disease in Young and Old: A Time for Re-Evaluation | A Program of Transition to Adult Care for Sickle Cell Disease. Accessed December 22, 2022. https://ashpublications.org/hematology/article/2019/1/496/422635/A-program-of-transition-to-adult-care-for-sickle
