Implementation of Two Developmental Screening Programs in Sickle Cell Disease Specialty Care.

Area of Science:

• Pediatric Health
• Neurodevelopmental Disorders
• Sickle Cell Disease Management

Background:

• Children with sickle cell disease (SCD) have a higher risk of neurodevelopmental disorders.
• Early identification and intervention are vital for managing developmental challenges in this population.

Purpose of the Study:

• To describe the implementation, protocols, and outcomes of two developmental screening programs in SCD specialty care settings.
• To identify lessons learned for effective developmental screening in children with SCD.

Main Methods:

• Program One: Retrospective medical record review of 201 children with SCD screened at ages 2 and 4 years.
• Program Two: Analysis of tracking data for 155 screenings across 67 children (ages 9-66 months).
• Outcomes assessed included screening results, parent concerns, and access to services.

Main Results:

• Both programs identified a significant proportion of children with developmental concerns (36-42% of screenings).
• Follow-up services were provided to 56-58% of identified children, with 67-75% receiving intervention for diagnosed neurodevelopmental disorders.
• Screening tools identified concerns even when parents did not express them.

Conclusions:

• Routine developmental screening is feasible, acceptable, and effective in SCD specialty care.
• Flexible, collaborative care models and sustainability are essential for successful programs.
• Pediatric psychologists play a key role in integrated care for children with SCD.