A systematic search and review of the discrimination in health care measure, and its adaptations.

BACKGROUND: Discrimination occurs in health care settings contributing to health inequities. Yet guidance on how best to measure discrimination in health care is still limited. OBJECTIVES: We sought to (1) identify and describe the characteristics of published studies that used the Discrimination in Health Care Measure, a scale first published in 2001; (2) review how the measure has been used or adapted and summarize the measure's published psychometric properties and its variations; and (3) summarize associations between the measure and health-related variables. METHODS: We performed a systematic search and review of the measure by searching PsycINFO, PubMed, Sociological Abstracts, and Web of Science from January 1, 2001 through January 31, 2017. We screened 260 unique articles, identified 22 eligible articles, and completed a narrative synthesis. RESULTS: Most studies measured race or ethnicity-based discrimination. All studies made minor revisions to the measure, and most reported high reliabilities. Discrimination in health care, using this measure, was associated with adverse health outcomes. DISCUSSION AND PRACTICE IMPLICATIONS: Study results indicate that the measure is easy to use and adapt. Researchers should consider using the Discrimination in Health Care Measure when designing studies that will examine individuals' discriminatory experiences when receiving health care.

A Profile of Care Coordination, Missed School Days, and Unmet Needs Among Oregon Children with Special Health Care Needs with Behavioral and Mental Health Conditions.

To inform Oregon's Title V needs assessment activities, we aimed to (1) characterize the state's subpopulation of children with special health care needs (CSHCN) with behavioral and mental health conditions (B/MHC) and (2) determine associations of care coordination with missed school days and unmet needs for this subpopulation. We analyzed 2009-2010 National Survey of Children with Special Health Care Needs data on 736 Oregon CSHCN < 18 years, including 418 CSHCN with B/MHC. Among Oregon CSHCN with B/MHC: 48.9% missed ≥ 4 school days, 25% had ≥ 1 unmet health services need, and 14.8% had ≥ 1 unmet family support services need. Care coordination was associated with lower adjusted odds of ≥ 1 unmet health services need but was not significantly associated with missed school days or unmet family support services need. The approach to identify Oregon CSHCN with B/MHC may be adopted by other states endeavoring to improve health for this vulnerable subpopulation.

Unmet Need and Financial Impact Disparities for US Children with ADHD.

OBJECTIVE: The 5.1million US children with attention-deficit/hyperactivity disorder (ADHD) have pronounced needs in education, occupational and speech therapy, and medical and behavioral treatments. Given known associations of ADHD diagnosis with race/ethnicity and parent education, this study aimed to assess how measures of socioeconomic status correlate with both adverse family financial impact of ADHD and disparities in unmet treatment need for ADHD. METHODS: Secondary analysis of children ages 8 to 17years whose households participated in the 2014 National Survey of the Diagnosis and Treatment of Attention-Deficit/Hyperactivity Disorder and Tourette Syndrome. Using bivariate testing, we examined associations among measures of socioeconomic status with unmet ADHD treatment need and family financial impact. Logistic regression models estimated the odds of having unmet treatment need, adjusting for demographic factors and family financial impact. RESULTS: Among US school-aged children with a current ADHD diagnosis, 44.3% experienced an adverse family financial impact from ADHD, and 11.6% had unmet need for ADHD treatment. Children with younger age at first ADHD diagnosis were more likely to experience adverse family financial impact. Children from non-English-speaking households were less likely to report unmet need compared to those from primarily English-speaking households. The adjusted odds of unmet need were twice as great among those who reported adverse family financial impact. CONCLUSION: Deeper understanding of the influence of the household language is important in ADHD needs assessments. Considering overall family financial circumstances may also be pertinent, particularly as children age, because earlier diagnosiswas associated with adverse financial outcomes. These findings could shape future clinic policies for targeting community resources.

Disparities in Familiarity With Developmental Disabilities Among Low-Income Parents.

OBJECTIVE: Parent knowledge about developmental disabilities (DDs) may facilitate access to DD care; however, parents may vary in their knowledge and familiarity with common DDs. This study aimed to assess racial/ethnic and language differences in low-income families' familiarity, knowledge, and personal experience with DDs. METHODS: We conducted a child development survey among 539 low-income parents of young children attending visits at the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) in 6 Oregon counties in 2015. Survey items assessed parent familiarity with early signs of DDs, self-reported knowledge about DDs, and personal experience with a friend or family member with a DD. Bivariable and multivariable analyses assessed differences in outcomes among non-Latino white (white), Latino English-proficient (Latino-EP), Latino limited-English-proficient (Latino-LEP), and non-Latino other race English-proficient (other race) parents. RESULTS: Overall, parent participants correctly identified 64.7% of early signs of DDs. White parents correctly identified the most early signs, even after adjustment for sociodemographic factors. Compared with white parents, Latino-LEP, Latino-EP, and other race parents were less likely to have heard of prevalent DDs, such as attention-deficit/hyperactivity disorder and autism, and less likely to have a friend or family member with a DD. CONCLUSIONS: Low-income Latino-LEP and other race parents have less familiarity or personal experience with DDs and are less aware of early signs of DDs compared to low-income white parents. Study findings suggest that interventions to reduce disparities in DD diagnosis and treatment should include increasing information transfer to parents in racial/ethnic and language minority communities.

Family-Centered Care Measurement and Associations With Unmet Health Care Need Among US Children.

OBJECTIVE: Family-centered care (FCC), including shared decision making (SDM), has become increasingly emphasized in pediatric health care delivery. Past studies using national surveys have used different FCC measurement approaches without determining their validity. We, therefore, sought to develop an FCC measurement model with Medical Expenditure Panel Survey (MEPS) items previously used to assess FCC or SDM; and to determine temporal associations of FCC with unmet health care need. METHODS: Four longitudinal MEPS data files (2007-2011) were combined. The study sample included 15,764 US children aged 0 to 17 years. Eight items assessed FCC, and 5 items assessed unmet health care need. We performed exploratory factor analyses to develop an FCC measurement model and fit a cross-lagged structural equation model to determine temporal associations between FCC and unmet health care need. RESULTS: Results supported a 2-factor FCC model including family-provider communication and SDM. The family-provider communication factor was indicated by items reflecting general communication between the child's doctor and family. The SDM factor was indicated by items reflecting decision-making about the child's health care. Adjusted cross-lagged structural equation model results showed family-provider communication and SDM were associated with a reduced likelihood of unmet health care need the following year. Unmet health care need was not significantly associated with family-provider communication or SDM the subsequent year. CONCLUSIONS: Study results support differentiating between family-provider communication and SDM as interrelated aspects of FCC in future pediatric health care quality measurement and improvement. Family-provider communication and SDM may reduce the likelihood of unmet health care need the following year among US children.

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.

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.

Variation in Educational Services Receipt Among US Children With Developmental Conditions.

OBJECTIVE: To examine the relationship between ease of access to needed community-based services (ease of access) and educational services receipt, and variation in educational services receipt by sociodemographic and need factors among a nationally representative sample of children with autism spectrum disorder (ASD), developmental delay (DD), and/or intellectual disability (ID). METHODS: Data from the 2009-2010 National Survey of Children with Special Health Care Needs were linked to the 2011 Survey of Pathways to Diagnosis and Services on a sample of 3502 US children aged 6 to 17 years with ASD, DD, and/or ID. Descriptive statistics, chi-square tests, and multivariable logistic regression models were used to determine associations of educational services receipt with ease of access and sociodemographic and need factors. RESULTS: Among children with developmental conditions, nearly half (49.7%) lacked easy access to services, and 16.9% did not have an individualized education program (IEP). Among children with an IEP, those with ease of access were more likely to have an IEP that addressed parent concerns about the child's development and education than those unable to easily access services (adjusted odds ratio 2.77; 95% confidence interval 1.71-4.49). Need factors, including functional limitations status, care coordination need, developmental condition type, and early intervention receipt, were significantly associated with educational services receipt. CONCLUSIONS: Cross-systems initiatives facilitating service access remain important to ensuring the developmental needs of children with ASD, DD, and/or ID are met. Increased interprofessional collaboration promoting quality educational services receipt for children diagnosed with developmental conditions may further reduce disparities.

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.