Poster - #UCLAFSPH-17 - Keywords: intellectual and developmental disabilities, patient and provider level factors, developmental screening, developmental surveillance, medical home, cultural sensitivity, disparities, minority, vulnerable communities

Patient and Provider-Level Factors Associated with Receipt of Screening/Surveillance in Children with Intellectual and Developmental Disabilities

Purnima Bharath, MA1, Emmeline Chuang, PhD1,3, Jack Needleman, PhD, FAAN1, Kashia Rosenau, PhD1,2, and Alice Kuo, MD, PhD, MBA 1,2
1 University of California, Los Angeles (UCLA) Fielding School of Public Health, Los Angeles, CA, 2 UCLA David Geffen School of Medicine, 3University of California at Berkeley, Berkeley, CA

ABSTRACT:
Title: Patient and Provider-Level Factors Associated with Receipt of Screening/Surveillance in Children with Intellectual and Developmental Disabilities Background: At least 6.5% of children in the U.S. have intellectual and developmental disabilities (IDD), i.e., have neurodevelopmental disabilities characterized by impairments in cognition, communication, behavior and or motor skills. Early and continuous screening, surveillance or monitoring by a healthcare professional and receipt of patient-centered medical home care directly impacts whether these children receive interventions in a timely manner and predicts long-term health outcomes for this population. Currently only half of children with IDD receive care that meets all five components established for medical home. AIMS: We assessed factors associated with receipt of developmental screening/surveillance and high-quality primary care, defined as care that meets patient-centered medical home criteria, in a national sample of children with IDD. Secondary aims are to explore whether there are differences in receipt of screening/surveillance in children with IDD by race/ethnicity, language spoken at home, socioeconomic status including family structure, household income level and parental education. Methods: Sample We use 2017-2019 cross sectional data from the National Survey of Children’s Health Survey (NSCH, a nationally representative survey of children within the United States under 18 years of age. Population studied is children with intellectual and developmental disabilities aged 0 to 5 years (n=2,385). Measures Provider-level factors include components of the medical home focusing on care coordination and family-centered care. Patient-level factors include insurance status, race/ethnicity, primary language, family structure, income, and parental education. Data Analysis Descriptive statistics, bivariate and multivariate logistic regression analyses to estimate odds ratios of screening/surveillance. Results: Bivariate analyses using chi-square tests show that Black (6.7%) and Latino (12%) children make up disproportionally large percentages of children with IDD. Tests were also significant for more than half of all children with IDD (56%) not receiving care meeting medical home criteria and 34% of children did not receive effective care coordination. About 46% of neurodivergent families did not receive needed help when coordinating their child’s healthcare. More than one third of children with IDD belong to households with income levels of less than 200% FPL. Odds of having parental screening/provider monitoring decreased by 40% when the child was uninsured or was raised by a single parent/caregiver. Having a provider who understands a family’s culture and customs was positively associated with screening/surveillance. The odds of screening increased by 1.76 times when the provider was always or usually sensitive to the family’s culture, (95% CI, 1.1-2.8, p<0.05). Conclusion: Many children with intellectual and developmental disabilities are unable to access high-quality primary care that meets the medical home criteria. Having a provider with cultural sensitivity is key to improving uptake of screening/surveillance particularly in low-income minority communities. Discussion: With the rising prevalence of children with IDD, it is important to focus on serving this population segment. Helping these children get needed screening/surveillance and thereby access needed therapies/services can reduce disparities and shift some of the burden of care from these families to more supportive practices within primary care. These findings have the potential to: Drive resource allocation and programmatic priorities for supporting medical home models in meeting healthcare needs of these children. Guide culturally sensitive interventions for children with IDD. Future research should further explore: Best practices in supporting these children with screening/surveillance and culturally sensitive primary care support.