Sickle Stroke Screening: Engaging Family Compliance

Nature and scope of the project

Sickle Cell Disease (SCD) is known for acute vaso-occlusive pain but less recognized is that children with SCD are at unusually high risk for stroke. In 1998, a screening and intervention program (STOP study) demonstrated that many strokes could be prevented in children with SCD. Based on this evidence, annual stroke risk screening using the transcranial Doppler (TCD) procedure became the standard of care for SCD type SS and S beta zero thalassemia, ages 2-16 years. However, family compliance with the annual TCD screening is low at UI Health and many other sites. An NIH-funded multicenter project, DISPLACE, assigned a sickle stroke screen coordinator (SSSC) to address family noncompliance with TCD screening, but the activities of the SSSC were left to each local medical center to develop.

Synthesis and analysis of supporting literature

Compliance with annual TCD screening was high when supported by a clinical research infrastructure, but compliance has fallen when managed by clinical teams (Cabana 2019). Many tools can improve compliance with evidence-based care, including pediatric preventive care such as immunizations. Smartphone apps and community health workers can improve compliance for some sickle cell care. However, to our knowledge, specific tools have yet to be identified for compliance with TCD screening in sickle cell disease.

Project implementation

Tactics to engage compliance included 1) 3-way phone calls to schedule appointments, 2) having family place appointment in their cell phone calendar, 3) partnering with prior authorization staff to avoid procedure cancellation, 4) follow-up appointment call reminder, and 5) frequent updates of family contact information.

Evaluation criteria

Monthly reports to hematology providers to illustrate changes in compliance rates. The SSSC developed tactics around phone contact with families to improve the TCD screens completed for eligible children.


Utilizing a SSSC helped to identify barriers impeding family completion of annual sickle stroke screening, using several tactics to make phone contacts more valuable and personal. Novel approaches resulted in progressive compliance rates from 2020 to 2023.


Funding a SSSC may challenge a budget. This person must be licensed to order a TCD and provide some level of interpretation.



Sickle Stroke Screening: Engaging Family Compliance