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Evaluating high-sensitivity troponin levels in people with sickle cell disease in the emergency department.

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Related Experiment Video

Updated: Jul 12, 2025

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Practice Patterns for Addressing Developmental-Behavioral Concerns in Sickle Cell Specialty Care.

Alyssa M Schlenz1,2, Shannon Phillips3, Martina Mueller3,4

  • 1Department of Pediatrics, Medical University of South Carolina.

Clinical Practice in Pediatric Psychology
|October 25, 2023
PubMed
Summary

Children with sickle cell disease (SCD) face higher risks for neurodevelopmental issues. While many clinics follow guidelines, varied practices and access barriers hinder optimal developmental-behavioral care for these children.

Keywords:
behaviorclinical practicedevelopmentsickle cell disease

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Area of Science:

  • Pediatric Health
  • Neurodevelopmental Disorders
  • Healthcare Delivery Systems

Background:

  • Children with sickle cell disease (SCD) exhibit increased vulnerability to neurodevelopmental and behavioral challenges.
  • Current care guidelines exist, but their implementation and consistency across specialized centers vary.
  • The Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE) consortium aimed to assess current practices.

Purpose of the Study:

  • To describe developmental-behavioral practice patterns within the DISPLACE consortium.
  • To identify methods for early detection, referral, and access to psychological services for children with SCD.
  • To understand barriers affecting the delivery of developmental-behavioral care.

Main Methods:

  • An internal survey was administered to Principal Investigators across 28 DISPLACE consortium sites.
  • The survey collected data on identification methods, referral pathways, psychologist availability, and service barriers.
  • Descriptive statistics were used to analyze reported practice patterns.

Main Results:

  • Most sites employed informal methods for developmental-behavioral concern detection; over one-third utilized structured protocols.
  • Referrals were commonly triggered by concerns from parents, providers, schools, or stroke events.
  • While psychologists were often available within SCD clinics, long waitlists and insurance issues presented significant barriers to evaluation and treatment.

Conclusions:

  • Practices within the DISPLACE consortium show adherence to some guidelines but significant variation where guidelines are unclear or absent.
  • Further research is required to refine guidelines, clarify the role of psychology in SCD care, and address identified barriers.
  • Improving developmental-behavioral care necessitates collaboration and unified recommendations for psychologists supporting children with SCD.