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 One reviewed medical records for 201 children with SCD screened at ages 2 and 4 years. Program Two 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 One and 36% of unique children screened in Program Two. Program One resulted in 56% of identified children receiving follow-up developmental services and 62% receiving developmental monitoring. Program Two 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.
Objective: Most of the transition literature examines adolescents and young adults with special healthcare needs, though many youth will eventually transition to adult healthcare providers, regardless of medical complexity. This study addresses this gap by examining transition needs and experiences specifically within a college student sample of emerging adults without complex medical needs.
Methods: 108 college students (Mage=20.93 years, SD=1.14) completed interviews and questionnaires regarding transition. The most difficult and easiest aspects of healthcare self-management were thematically coded. Differences in questionnaires were assessed across sources of transition education.
Results: 52% of college students reported receiving education about managing healthcare from medical providers versus 95% from caregivers. Notably, 57% desired more support. Those receiving medical provider education reported higher responsibility. Students reported most difficulty managing health insurance. Results were similar across racial and ethnic groups and genders.
Conclusions: Gaps in transition preparation include low rates of medical provider education and support regarding health insurance. College students receiving education from medical providers reported greater healthcare responsibility. Provider-led transition education is needed for college students without complex medical needs.
Implications for impact statement: This study suggests that college students without complex medical conditions experience gaps in transition preparation. Although half reported talking to their medical provider about transition to adult care, many desired more support, with the greatest difficulty reported in learning to manage health insurance.
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