Olivia J. Lindly

Disparities in Diagnosis and Treatment of Autism in Latino and Non-Latino White Families

This study assesses disparities in diagnosis and treatment of autism spectrum disorder among non-Latino white and Latino families with English proficiency or limited English proficiency. OBJECTIVES: To compare barriers to autism spectrum disorder (ASD) diagnosis and current ASD-related service use among non-Latino white (NLW) families and Latino families with English proficiency (L-EP) or limited English proficiency (L-LEP). METHODS: We conducted a mixed-mode survey of families of children with confirmed ASD seen at specialty clinics in 3 United States cities. Bivariate and multivariate analyses compared barriers to ASD diagnosis, current service use, and unmet therapy need among NLW, L-EP, and L-LEP families. RESULTS: Overall, barriers to ASD diagnosis were prevalent: families (n = 352) experienced a mean of 8 of 15 barriers to ASD diagnosis. The most prevalent barriers overall were “stress of diagnostic process,” “parent knowledge about ASD,” and “understanding medical system.” Compared with NLW families, L-LEP families were more likely to experience barriers related to knowledge about ASD and trust in providers. Children in L-LEP families also had fewer current therapy hours and more unmet therapy needs than children in NLW families. L-EP families’ barriers and treatment services use profile was more similar to NLW than to L-LEP families. CONCLUSIONS: English proficiency was an important marker for barriers to ASD diagnosis and treatment in Latinos. Increasing ASD-related knowledge and provider trust may decrease disparities in the diagnosis and treatment of ASD among US Latinos.

Family Impacts Among Children With Autism Spectrum Disorder: The Role of Health Care Quality

OBJECTIVE To compare health care quality and family employment and financial impacts among children with special health care needs (CSHCN) with autism spectrum disorder (CSHCN + ASD), CSHCN with functional limitations (CSHCN + FL), and CSHCN lacking these conditions (other CSHCN); to test whether high health care quality was associated with reduced family impacts among CSHCN + ASD. METHODS Data from the 2009-2010 National Survey of CSHCN were used to compare 3025 CSHCN + ASD, 6505 CSHCN + FL, and 28,296 other CSHCN. Weighted multivariate logistic regression analyses examined 6 age-relevant, federally defined health care quality indicators and 5 family financial and employment impact indicators. Two composite measures were additionally used: 1) receipt of care that met all age-relevant quality indicators; and 2) had ≥ 2 of the 5 adverse family impacts. RESULTS Across all health care quality indicators, CSHCN + ASD fared poorly, with only 7.4% meeting all age-relevant indicators. CSHCN + ASD had worse health care quality than other CSHCN, including CSHCN + FL. CSHCN + ASD also had high rates of adverse family impact, with over half experiencing ≥ 2 adverse impacts. Rates of adverse family impact were higher in CSHCN + ASD than other CSHCN, including CSHCN + FL. Among CSHCN + ASD, those whose health care that met federal quality standards were less likely to have multiple adverse family impacts than CSHCN + ASD whose health care did not meet federal quality standards. CONCLUSIONS CSHCN + ASD are more prone to experience poor health care quality and family impacts than other CSHCN, even CSHCN + FL. Receipt of care meeting federal quality standards may potentially lessen adverse family impacts for CSHCN + ASD.

Parent Health Beliefs, Social Determinants of Health, and Child Health Services Utilization among US School-Age Children with Autism

Objective:Substantial variation exists in autism spectrum disorder (ASD) care by race, ethnicity, and socioeconomic status; however, the role of parent health beliefs in this variation is poorly understood. Study goals were to (1) examine variation in parent beliefs about ASD prognosis and treatment according to social determinants of health (SDH) and (2) assess whether this variation was associated with variable health services utilization, among 1420 children with special health care needs (CSHCN) having ASD. Methods:We used linked data from the 2011 Survey of Pathways to Diagnosis and Treatment and the 2009–2010 National Survey of Children with Special Health Care Needs. Bivariate and multivariate analyses assessed variation in parent beliefs according to race/ethnicity, household income, and parent educational attainment. Further analyses assessed whether variation in beliefs was associated with the use of psychotropic medication, traditional therapy, or complementary/alternative therapy for ASD. Results:Parents of lower educational attainment or who had lower income were more likely to think that their childs condition was a mystery. Near-poor families were less likely to believe that they had the power to change the childs condition. Parents of minority children were more likely than white children to view their childs condition as temporary. However, these differences in beliefs only had modest associations with variation in use of the health services analyzed. Conclusions:Some SDH-related variation exists in health beliefs among parents of children with ASD, but these differences may not be the main factors accounting for ASD health care disparities.

Parent Beliefs about the Causes of Learning and Developmental Problems among Children with Autism Spectrum Disorder: Results from a National Survey.

This study aimed to assess variation in parent beliefs about causes of learning and developmental problems in U.S. children with autism spectrum disorder, using data from a nationally representative survey. Results showed that beliefs about a genetic/hereditary cause of learning/developmental problems were most common, but nearly as many parents believed in exposure causes. Forty present of parents had no definite causal beliefs. On multivariate analysis, parents who were non-White, publicly insured or poor were more likely than other parents to endorse exposure causes, or less likely to endorse genetic causes, compared to other parents. Further research should assess how these beliefs modify health care quality or services use.

Systematic Evidence-Based Quality Measurement Life-Cycle Approach to Measure Retirement in CHIPRA

OBJECTIVE In 2009, Centers for Medicare and Medicaid Services (CMS) publicly released an initial child core set (CCS) of health care quality measures for voluntary reporting by state Medicaid and Childrens Health Insurance Program (CHIP) programs. CMS is responsible for implementing the reporting program and for updating the CCS annually. We assessed selected CCS measures for potential retirement. METHODS We identified a 23-member external advisory group to provide relevant expertise. We worked with the group to identify 4 major criteria with multiple subcomponents for assessing the measures. We provided information corresponding to each criterion and subcriterion, using a variety of sources such as the 2009 Medicaid Analytic eXtract (MAX), state-level Medicaid and CHIP data submitted to the CMS, and summaries of published literature on clinical and quality improvement effectiveness related to the CCS topics. Using this information, the group: 1) used a modified Delphi process to score the measures in 2 anonymous scoring rounds (on a scale of 1 to 9 in each round); 2) voted on whether each measure should be retired; and 3) provided narrative explanations of their choices (which formed the basis of our qualitative findings). Recommendations were reviewed by CMS before promulgation to state programs. RESULTS The Subcommittee of the National Advisory Council on Healthcare Research and Quality (SNAC) recommended that the 4 major criteria be importance, scientific acceptability, feasibility, and usability. The SNAC recommended 3 measures for retirement: access to primary care; testing for strep before recommending antibiotics for pharyngitis; and annual HbA1c testing of children with diabetes. Explanations for suggesting retirement of the measures included: views that the well-visit measures were a better measure of access than the primary care measure; a likely ceiling effect (pharyngitis); and the paucity of clinical evidence and low prevalence (both for HbA1c). CMS recommended that state Medicaid and CHIP programs retire 2 of the recommended measures from the CCS, but retained the access to primary care measure. CONCLUSIONS Periodic reassessment of the value of health care quality measures can reduce reporting burden and allow measure users to focus on measures with higher likelihood of leading to improvements in quality of care and child health outcomes.

Unmet Health Services Needs Among US Children with Developmental Disabilities: Associations with Family Impact and Child Functioning.

Objective: To determine associations of unmet needs for child or family health services with (1) adverse family financial and employment impacts and (2) child behavioral functioning problems among US children with autism spectrum disorder (ASD), developmental delay (DD), and/or intellectual disability (ID). Method: This was a secondary analysis of parent-reported data from the 2009 to 2010 National Survey of Children with Special Health Care Needs linked to the 2011 Survey of Pathways to Diagnosis and Services. The study sample (n = 3,518) represented an estimated 1,803,112 US children aged 6 to 17 years with current ASD, DD, and/or ID (developmental disabilities). Dependent variables included adverse family financial and employment impacts, as well as child behavioral functioning problems. The independent variables of interest were unmet need for (1) child health services and (2) family health services. Multivariable logistic regression models were fit to examine associations. Results: Unmet need for child and family health services, adverse family financial and employment impacts, and child behavioral functioning problems were prevalent among US children with developmental disabilities. Unmet needs were associated with an increased likelihood of adverse family employment and financial impacts. Unmet needs were associated with an increased likelihood of child behavioral functioning problems the following year; however, this association was not statistically significant. Conclusion: Unmet needs are associated with adverse impacts for children with developmental disabilities and their families. Increased access to and coordination of needed health services following ASD, DD, and/or ID diagnosis may improve outcomes for children with developmental disabilities and their families.

Parents’ Use of Complementary Health Approaches for Young Children with Autism Spectrum Disorder

Knowledge of why parents use complementary health approaches (CHA) for children with autism spectrum disorder (ASD) is limited. We conducted a mixed methods study to better understand factors influencing parents’ decision to use CHA for ASD. Parent-reported data about CHA use were collected on a probability sample of 352 young children with ASD in Denver, Colorado; Los Angeles, California; or Portland, Oregon. Follow-back interviews were conducted with 31 parents. CHA use was negatively associated with older child age and positively associated with parents’ belief ASD has major consequences, living in Portland or Denver, and medication use. Nine themes help explain these results. Study findings may have utility for healthcare providers working with children with ASD and their families regarding CHA.

Parent Perceptions of Community Autism Spectrum Disorder Stigma: Measure Validation and Associations in a Multi-site Sample

In this study we developed a brief, English/Spanish bilingual parent-reported scale of perceived community autism spectrum disorder (ASD) stigma and tested it in a multi-site sample of Latino and non-Latino white parents of children with ASD. Confirmatory factor analysis of the scale supported a single factor solution with 8 items showing good internal consistency. Regression modeling suggested that stigma score was associated with unmet ASD care needs but not therapy hours or therapy types. Child public insurance, parent nativity, number of children with ASD in the household, parent-reported ASD severity, and family structure, were associated with higher stigma score. The scale and the scale’s associations with service use may be useful to those attempting to measure or reduce ASD stigma.

Clarifying the Predictive Value of Family‐Centered Care and Shared Decision Making for Pediatric Healthcare Outcomes Using the Medical Expenditure Panel Survey

Objectives. To estimate (1) family‐centered care (FCC) and shared decision‐making (SDM) prevalence, and (2) associations of FCC and SDM (FCC/SDM) with health care outcomes among U.S. children. Data Source. The Medical Expenditure Panel Survey Household Component (MEPS‐HC), a nationally representative survey of the noninstitutionalized, civilian population. Study Design. Secondary analyses of prospectively collected data on 15,764 U.S. children were conducted to examine FCC/SDM prevalence in year 1 and associations of FCC/SDM in year 1 with health services utilization, medical expenditures, and unmet health care needs in year 2. Data Collection/Extraction Methods. We combined four MEPS‐HC longitudinal files from 2007 to 2011. Principal Findings. FCC/SDM prevalence in year 1 varied from 38.6 to 93.7 percent, and it was lower for composites with more stringent scoring approaches. FCC/SDM composites with stringent scoring approaches in year 1 were associated with reduced unmet needs in year 2. FCC/SDM, across all year 1 composites, was not associated with health services utilization or medical expenditures in year 2. FCC/SDM year 1 subcomponents describing consensus building and mutual agreement were consistently associated with unmet health care needs in year 2. Conclusions. FCC/SDM composites with stringent scoring approaches measuring consensus building and mutual agreement may have the greatest utility for pediatric health care quality improvement efforts.