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

Abstract

Objective:

Developmental screening is a critical component of care for children with sickle cell disease (SCD), who are at elevated risk for neurodevelopmental disorders. This report describes the implementation of two related developmental screening programs implemented in different SCD specialty care settings with the purpose of describing screening protocols, outcomes, and lessons learned.

Methods:

Program 1 reviewed medical records for 201 children with SCD screened at ages 2 and 4 years. Program 2 reviewed program tracking and visit notes for 155 screenings across 67 children screened between 9 and 66 months of age. Key outcomes included characteristics of children screened, screening results, concordance between parent concerns and screening outcomes, and access to evaluation and intervention services.

Results:

Each program identified a substantial number of children with developmental concerns, including 42% of screenings in Program 1 and 36% of unique children screened in Program 2. Program 1 resulted in 56% of identified children receiving follow-up developmental services and 62% receiving developmental monitoring. Program 2 resulted in 58% of identified children receiving further evaluation following developmental screening, with 67–75% of children with neurodevelopmental diagnoses receiving intervention services following evaluation. While parent concerns were related to screening outcomes, screening instruments detected many children whose parents did not express developmental concerns.

Conclusions:

Routine developmental screening is a feasible, acceptable, and effective method for identifying concerns in children with SCD in specialty care. Flexible and collaborative care and sustainability are key considerations for effective programming, with pediatric psychologists uniquely positioned to provide optimal integrated care.

Implications for Impact Statement

Children with sickle cell disease are at high risk for neurodevelopmental disorders and benefit from early, high-quality identification and support for these concerns. Routine developmental screening delivered by a psychologist in specialty sickle cell disease care is a feasible, acceptable, and sustainable approach for meeting these important needs.