Telemedicine for pediatric sickle cell patients in medically underserved areas
Individuals living in rural and medically underserved areas, such as parts of the Midwest, can experience significant barriers to accessing the comprehensive healthcare that is considered optimal for sickle cell. Telemedicine, or virtual care, is one potential way to close gaps in care for families who may experience these barriers. In our caregiver-informed telemedicine program, families and young adults can participate in their (or their child's) care through virtual appointments using a remote medical exam device.
Improving access to neurocognitive and social-emotional screening for youth with sickle cell disease
Due to the nature of sickle cell disease (SCD) and how it limits the flow of oxygen throughout the body, patients with sickle cell are at increased risk of neurocognitive impairment, which impacts emotional, social, and academic development. Within our comprehensive pediatric sickle cell program, our team's clinical psychologist, Julia LaMotte, PhD, hosts a neurocognitive screening clinic to provide an opportunity to examine the cognitive profile of our pediatric patients while they receive their routine sickle cell care. This screening allows Dr. LaMotte to provide diagnoses, recommendations for further growth and development, and referrals for additional expertise. This method of screening is brief, convenient for families, and provides clarity on how their child's educational and developmental needs can be met as the continue to grow.
Feasibility of Point-of-Care Ultrasound (POCUS) for Diagnosis of Acute Chest Syndrome in Patients with Sickle Cell Disease
Acute Chest Syndrome (ACS) is a potentially life-threatening complication of sickle cell disease that affects up to 30% of pediatric patients with sickle cell disease every year. ACS is an acute complication that occurs in the lungs, characterized by symptoms of fever, hypoxia, respiratory distress, and shortness of breath. Historically, diagnosis of ACS has relied on imaging with chest x-rays, which, while reliable for imaging, exposes patients to ionizing radiation. Point-of-care ultrasounds (POCUS), in contrast, have been shown to be effective in identifying pulmonary densities without radiation exposure. In our research, feasibility of lung POCUS for diagnosis of ACS in children with SCD is being investigated to offer an alternative diagnostic imaging method. This project is conducted in collaboration with pediatric hematology/oncology fellow Thomas Fisher-Heath, DO.
Collaborative Research Projects
The Jacob Lab for Sickle Cell Health Equity participates in several multicenter studies focused on advancing care quality nationwide for individuals and families impacted by sickle cell disease. These studies include:
- GRNDaD: a national registry dedicated to collecting longitudinal data on how clinical characteristics predict care outcomes.
- IDOH Lifespan Care for Sickle Cell: a collaborative effort between Indiana SCD care centers and the Indiana Department of Health aimed at improving services related to transition readiness, social and emotional health of SCD warriors, and disease education for patients and providers across the state.
- SCOGS: in collaboration with SCD experts across the country, we developed an ordinal disease severity grading system to standardize disease assessment of patients with SCD.
