Desmond was born in Indiana and diagnosed with Sickle Cell Disease (SCD) in infancy. His mother was a single parent, had never heard of SCD before, and had a lot to learn about taking care of a child with a chronic disease.
By the time Desmond was a toddler, he received blood transfusions every three months. He suffered a stroke at the age of four, then another stroke at age six. Like many families of children with SCD, he and his mother struggled to find health care providers that could manage the disease. So they moved from Indiana to Florida, near the Sickle Cell Program at Johns Hopkins All Children’s Hospital.
Imagine being born with a painful, debilitating illness that has no cure. As a child, your mother decides how to manage your care, but when you become an adult, you become responsible for managing it yourself.
Now pause for moment and put yourself in Desmond’s shoes. Imagine being born with a painful, debilitating illness that has no cure. As a child, your mother decides how to manage your care, but when you become an adult, you become responsible for managing it yourself. That’s where the SCUPLT program at Johns Hopkins All Children’s Hospital comes in—it prepares pediatric patients for the transition to adult care beginning at age 13 up to age 21. Now Desmond is in his twenties and was never left alone to with the burden of managing this transition. Having programs that help young adults with Sickle Cell Disease transition from pediatric to adult care is vital.
Sickle Cell Disease is predominantly seen in people of African descent; about 1 in every 365 African Americans are born with it. Today the average life expectancy for a person living with SCD is mid-forties, in the past people with Sickle Cell Disease frequently died in childhood. Therefore, a growing number of children who suffer from SCD are living well into adulthood. We need strong care models like SCULPT for pediatric patients with SCD to successfully transition to adult care.
A child with SCD is likely to have only one multidisciplinary team that provides care until adulthood, so they must find an entirely new team of providers. This can be a great challenge because programs exist to transition pediatric patients with SCD to adult care, however, they are few and far between.
Due to the lack of resources for adults with SCD, patients often find themselves having more crisis events and seek treatment in the emergency department (ED). Sadly, many young adults in crisis who seek medical attention in an ED do not receive quality care and are even turned away because of providers’ lack of knowledge about SCD and pain crisis events. In addition to transitional programs for SCD patients, we need more SCD educational resources for providers.
Nurse can play a valuable role in transitioning pediatric patients with SCD to adult care. Nurses can provide guidance on self-management for Sickle Cell Disease. They can educate on the importance of maintaining communication with providers and offer resources to help patients select care providers . Additionally, nurses can advocate for their patient to ensure the patient’s needs are met during the transition.
Furthermore, advanced practice nurses increase the number of primary care providers that know how to manage the complexity of SCD. And research nurses can produce data on the health and cost benefits of the SCD transitional care model that influence policy, funding, and encourage inclusion of these programs in the larger health care system.
In sum, with the growing number of pediatric patients living with SCD who will become adults, we need more programs that help them transition from one health care setting to another, just like what the Johns Hopkins SCULPT program did for Desmond. And nurses can play a key role in getting the transition of care models integrated in all health care systems. Together, we can improve access to care and health outcomes as they age for people with Sickle Cell Disease.
This blog is a part of the “Dialogues in Health Equity” series by the Health Equity Faculty Interest Group. They are committed to decreasing health disparities experienced by local and global communities by promoting social justice and health equity through nursing practice, research, education, and service.
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ABOUT THE AUTHOR: JULIA MUNDT
Julia Mundt, MSN, is a recent graduate of the MSN (Entry into Nursing) program, member of Sigma Theta Tau International Honor Society, and currently a DNP Family Primary Care NP student at the Johns Hopkins School of Nursing. Her interests include health disparities effecting young adults and health equity for underserved populations in the primary setting.