Referral Outcomes From a Neurocognitive Screening Program for Pediatric Sickle Cell Disease

Abstract

Objective:

Pediatric sickle cell disease (SCD) is associated with neurocognitive and academic impairment. However, not all patients receive appropriate educational or therapeutic services. It is important to identify patients at risk of academic or psychosocial difficulties and make appropriate referrals. This article explores referrals made from a screening program within a comprehensive SCD clinic.

Method:

All patients seen at the clinic were eligible for participation in the screening program. Patients (N = 61) cross three age cohorts (i.e., age 6 to 7, age 11 to 12, and age 15 to 16) consented to research participation. Participants completed a 1-hr screening that included cognitive, academic, attention, and parent-report measures of behavior and executive functioning and caregiver and patient interviews.

Results:

Parents reported concerns across academic and learning domains, and performance on clinical measures suggested a high rate of patients at least one standard deviation below normative means. Following screening, 48% of patients were referred for additional support services via an existing Section 504 Plan/IEP, whereas 18% more were recommended to have a plan implemented. Of the participants, 41% were referred for further evaluation or counseling, whereas 26% were diagnosed with attention-deficit/hyperactivity disorder or had an existing diagnosis confirmed.

Conclusions:

Neurocognitive screening in SCD is essential. Participants in this program demonstrated challenges across many domains and received a broad range of recommendations and referrals. Problems were identified above and beyond parent-report concerns. Future research should identify incremental value of specific measures used and whether additional tiers of screening are necessary.

Implications for Impact Statement

This article reports on a neurocognitive screening program for children with Sickle Cell Disease. Results suggest that a brief screening, implemented within a clinic screening is feasible and beneficial to patients. Recommendations for implementation are provided and may be applicable to other pediatric disease groups as well.

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