This issue features Lori Crosby, an associate professor in the Division of Behavioral Medicine and Clinical Psychology at Cincinnati Children’s Hospital. Crosby received a $1.7 million grant (K07 Award) from the NIH National Heart, Lung, and Blood Institute (NHLBI) to address common barriers and challenges among patients with sickle cell disease, parents, and providers. In addition, Crosby’s goal is to develop more effective transitions between pediatric and adult care providers using self-management training and systems redesign. She discussed her goals for advancing clinical research and practice in sickle cell disease and the importance of addressing barriers, integrating technology, and ensuring patient engagement across systems.

 

Describe the K Award’s goals and the implications for patients with sickle cell disease.

The grant will change the way that care is currently being provided by improving care coordination. The grant’s primary goal is to develop a patient portal (My Chart for SCD) specifically for patients with sickle cell disease that expands current electronic medical record system functions. Patients will be able to use this portal as a pediatric patient and then take this information with them to their adult provider. It provides viewable, downloadable, and interactive functions that promote engagement in their care and development of self-management skills. Using these tools while involving parents will improve care, transition, and ultimately outcomes.

Why is it critical to address transition from pediatric to adult care?

The period between adolescence and adulthood is a critical and vulnerable time for pediatric patients. In the case of sickle cell disease, the risk factors are well documented. This is the time, not only when patients are transitioning to adult care, but also when patients are facing additional developmental challenges related to life and puberty (e.g., increased independence, getting their first job, going to college). There are also fewer adult hematologists relative to pediatric specialists. Additionally, emerging data shows barriers related to health care access, stigma, perceived healthcare quality, and trust in the healthcare system relative to the pediatric-care system. Finally, there may be sociocultural factors that complicate transition factors in the sickle cell population (e.g., health beliefs and expectations).

Why is working with pediatric and adult providers an essential component?

Increasingly the literature has recognized that working with patients alone is not sufficient to address critical gaps in care. Providers are an important part of the equation. The Wagner Chronic Care Model affirms that both an informed, activated patient and a prepared, proactive team are critical to improving health outcomes for chronic conditions such as sickle cell disease. Thus, an essential component of the proposed intervention is preparing adult providers for the transitioning patient (e.g., Epic Link, an adult provider access to the pediatric electronic medical record) and facilitating improved patient–provider communication through systems redesign (e.g., provider self-management support toolkit). It is not until we address both patient and provider barriers to transitioning to the adult healthcare system that we can hope to improve this process and health outcomes in young adulthood.

Dr. Crosby has served on the American Psychological Association’s Presidential Task Force on Advancing Practice. She has also served on SPP’s Diversity Committee and SIG; NHLBI’s Sickle Cell Disease Awareness and Education Strategy Development; and NHLBI’s Health Objectives in Sickle Cell Disease Workgroups.