Last data update: Dec 02, 2024. (Total: 48272 publications since 2009)
Records 1-26 (of 26 Records) |
Query Trace: Rice CE[original query] |
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Prevalence of functional disabilities and associations among disabilities, violence, and HIV among adolescents and young adults in Lesotho
Massetti GM , Stamatakis C , Charania S , Annor FB , Rice CE , Hegle J , Ramphalla P , Sechache M , Motheo M . J Epidemiol Glob Health 2024 INTRODUCTION: Lesotho has the second-highest prevalence of HIV. Despite progress in achieving HIV epidemic control targets, inequities persist among certain groups, particularly associations between disability, HIV, and violence. We assessed the prevalence of disability and examined associations between disability and HIV and violence using data from the 2018 Lesotho Violence Against Children and Youth Survey (VACS). METHODS: Lesotho VACS was a nationally representative survey of females and males ages 13-24. We assessed the associations between disability status and HIV, sexual risk behaviours, and violence using logistic regression, incorporating survey weights. RESULTS: Weighted functional disability prevalence was 14.1% for females (95% confidence interval [CI] 12.7-15.4) and 7.3% for males (5.3-9.2). Compared with females with no disabilities, females with disabilities had higher odds of being HIV positive (adjusted odds ratio [aOR] 1.92, 1.34-2.76), having transactional sex (aOR 1.79, 1.09-2.95), and experiencing any lifetime violence (aOR 2.20, 1.82-2.65), sexual violence (aOR 1.77, 1.36-2.31), emotional violence (2.02. 1.61-2.53), physical violence (aOR 1.85, 1.54-2.24), witnessing interparental violence (aOR 1.71, 1.46-2.01), and witnessing community violence (aOR 1.52, 1.26-1.84). Males with disabilities had higher odds of having transactional sex (aOR 4.30, 1.35-13.73), having recent multiple sex partners (aOR 2.31, 1.13-4.75), experiencing emotional violence (aOR 2.85, 1.39-5.82), and witnessing interparental violence (aOR 1.78, 1.12-2.84). HIV models for males did not converge due to low numbers. CONCLUSION: Findings emphasize the importance of inclusion and accessibility for adolescents and young adults with disabilities in prevention and services for violence and HIV. Ending HIV in Lesotho depends on addressing the vulnerabilities that lead to potential infection including violence and ensuring equitable services for all. |
Lessons learned: COVID-19 vaccinations and people with disabilities
Rattay K , Thierry JM , Yeargin-Allsopp M , Griffin-Blake S , Rice CE , Chatham-Stephens K , Remley K . Vaccine 2024 This manuscript is being submitted as a Commentary; Abstract not applicable. |
Variation in identifying children and adolescents with disability and developmental disability in population-based public health surveys
Russell LA , Tinker SC , Rice CE , Ryerson AB , Gonzalez MG . Disabil Health J 2023 101556 BACKGROUND: The term "developmental disability" (DD) is inconsistently defined and applied depending on purpose and across sources, including in legislation. OBJECTIVE: This project aimed to identify existing definitions of disability and DD and to determine the extent to which each definition could be operationalized to produce prevalence estimates using data from U.S. national surveys. METHODS: Using data among children <18 years from the 2016-2018 National Health Interview Survey (NHIS) and National Survey of Children's Health (NSCH), we estimated the prevalence of two definitions of disability (Washington Group Short Set on Functioning, American Community Survey) and seven definitions of DD [Health and Human Services (ever/current), Developmental Disabilities Assistance and Bill of Rights Act of 2000 (1+, 2+, or 3+ components), and Diagnostic and Statistical Manual of Mental Disorders, 5th ed (ever/current)]. Complex sample design variables and weights were used to calculate nationally representative prevalence. RESULTS: Disability (NHIS: 5.2-6.3%; NSCH: 9.2-11.9%) and DD prevalence (NHIS: 0.6-18.0% and NSCH: 0.2-22.2%) varied depending on the definition and data source. For the same definition, NSCH prevalence estimates tended to be higher than NHIS estimates. CONCLUSIONS: The substantial variability in estimated prevalence of disability and DD among children in the United States may be in part due to the surveys not representing all components of each definition. Different or additional questions in national surveys may better capture existing definitions of disability and DD. Considering the data collection goals may help determine the optimal definition to provide useful information for public health action. |
Effectiveness of the original monovalent coronavirus disease 2019 vaccines in preventing emergency department or urgent care encounters and hospitalizations among adults with disabilities: VISION Network, June 2021-September 2022
Patel P , Schrader KE , Rice CE , Rowley E , Cree RA , DeSilva MB , Embi PJ , Gaglani M , Grannis SJ , Ong TC , Stenehjem E , Naleway AL , Ball S , Natarajan K , Klein NP , Adams K , Kharbanda A , Ray C , Link-Gelles R , Tenforde MW . Open Forum Infect Dis 2023 10 (11) ofad474 Adults with disabilities are at increased risk for severe coronavirus disease 2019 (COVID-19). Using data across 9 states during Delta- and Omicron-predominant periods (June 2021-September 2022), we evaluated the effectiveness of the original monovalent COVID-19 messenger RNA vaccines among 521 206 emergency department/urgent care encounters (11 471 [2%] in patients with a documented disability) and 139 548 hospitalizations (16 569 [12%] in patients with a disability) for laboratory-confirmed COVID-19 illness in adults (aged ≥18 years). Across variant periods and for the primary series or booster doses, vaccine effectiveness was similar in those with and those without a disability. These findings highlight the importance of adults with disabilities staying up to date with COVID-19 vaccinations. |
Inequities in COVID-19 vaccination coverage for adolescents with and without disability, National Immunization Survey-Child COVID module, July 22, 2021-February 26, 2022
Hollis ND , Zhou T , Rice CE , Yeargin-Allsopp M , Cree RA , Singleton JA , Santibanez TA , Ryerson AB . Disabil Health J 2023 16 (4) 101509 BACKGROUND: Some people with disabilities are likely at increased risk of health impacts from coronavirus disease 2019 (COVID-19). OBJECTIVE: To describe parent-reported COVID-19 vaccination status of adolescents (aged 13-17 years) and parental intent to get their child vaccinated, among adolescents with versus without disability. METHODS: National Immunization Survey-Child COVID Module data from interviews conducted July 22, 2021-February 26, 2022, were analyzed to assess disability status and type and COVID-19 vaccination status for adolescents (n = 12,445). Prevalence estimates with 95% confidence intervals were calculated; T-tests were conducted. RESULTS: A lower percentage of adolescents with disability received ≥1 dose of COVID-19 vaccine compared to adolescents without disability (52.5% vs. 58.6%), [those with cognition (50.8%) or not performing errands independently (49.5%) disabilities were significantly lower]; and a higher percentage of parents reported intent to definitely vaccinate (9.9% vs. 6.5%) and definitely not vaccinate (14.9% vs. 11.8%) their adolescent. Among the unvaccinated adolescents, parents of those with disability were more likely to report difficulty getting their child vaccinated (19.1% vs. 12.9%), inconvenient vaccination-site operating hours (7.6% vs. 3.9%), difficulty knowing where to get their child vaccinated (7.2% vs. 2.7%), and difficulty getting to vaccination sites (6.0% vs. 3.0%), than parents of those without disability. CONCLUSIONS: Adolescents with disability had lower vaccination coverage compared to adolescents without disability. Parents of adolescents with disability reported higher intent to get their adolescents vaccinated, but among unvaccinated adolescents with disability, parents reported greater difficulty in accessing COVID-19 vaccines. Findings highlight the need for prioritized outreach to increase COVID-19 vaccination for this population. |
Health needs and use of services among children with developmental disabilities - United States, 2014-2018
Cogswell ME , Coil E , Tian LH , Tinker SC , Ryerson AB , Maenner MJ , Rice CE , Peacock G . MMWR Morb Mortal Wkly Rep 2022 71 (12) 453-458 Developmental delays, disorders, or disabilities (DDs) manifest in infancy and childhood and can limit a person's function throughout life* (1-3). To guide strategies to optimize health for U.S. children with DDs, CDC analyzed data from 44,299 participants in the 2014-2018 National Health Interview Survey (NHIS). Parents reported on 10 DDs,(†) functional abilities, health needs, and use of services. Among the approximately one in six (17.3%) U.S. children and adolescents aged 3-17 years (hereafter children) with one or more DDs, 5.7% had limited ability to move or play, 4.7% needed help with personal care, 4.6% needed special equipment, and 2.4% received home health care, compared with ≤1% for each of these measures among children without DDs. Children with DDs were two to seven times as likely as those without DDs to have taken prescription medication for ≥3 months (41.6% versus 8.4%), seen a mental health professional (30.6% versus 4.5%), a medical specialist (26.0% versus 12.4%), or a special therapist, such as a physical, occupational, or speech therapist, (25.0% versus 4.5%) during the past year, and 18 times as likely to have received special education or early intervention services (EIS) (41.9% versus 2.4%). These percentages varied by type of disability and by sociodemographic subgroup. DDs are common, and children with DDs often need substantial health care and services. Policies and programs that promote early identification of children with developmental delays and facilitate increased access to intervention services can improve health and reduce the need for services later in life.(§) Sociodemographic inequities merit further investigation to guide public health action and ensure early and equitable access to needed care and services. |
Defining in Detail and Evaluating Reliability of DSM-5 Criteria for Autism Spectrum Disorder (ASD) Among Children
Rice CE , Carpenter LA , Morrier MJ , Lord C , DiRienzo M , Boan A , Skowyra C , Fusco A , Baio J , Esler A , Zahorodny W , Hobson N , Mars A , Thurm A , Bishop S , Wiggins LD . J Autism Dev Disord 2022 52 (12) 5308-5320 This paper describes a process to define a comprehensive list of exemplars for seven core Diagnostic and Statistical Manual (DSM) diagnostic criteria for autism spectrum disorder (ASD), and report on interrater reliability in applying these exemplars to determine ASD case classification. Clinicians completed an iterative process to map specific exemplars from the CDC Autism and Developmental Disabilities Monitoring (ADDM) Network criteria for ASD surveillance, DSM-5 text, and diagnostic assessments to each of the core DSM-5 ASD criteria. Clinicians applied the diagnostic exemplars to child behavioral descriptions in existing evaluation records to establish initial reliability standards and then for blinded clinician review in one site (phase 1) and for two ADDM Network surveillance years (phase 2). Interrater reliability for each of the DSM-5 diagnostic categories and overall ASD classification was high (defined as very good .60-.79 to excellent.80 Kappa values) across sex, race/ethnicity, and cognitive levels for both phases. Classification of DSM-5 ASD by mapping specific exemplars from evaluation records by a diverse group of clinician raters is feasible and reliable. This framework provides confidence in the consistency of prevalence classifications of ASD and may be further applied to improve consistency of ASD diagnoses in clinical settings. |
Disparities in COVID-19 Vaccination Status, Intent, and Perceived Access for Noninstitutionalized Adults, by Disability Status - National Immunization Survey Adult COVID Module, United States, May 30-June 26, 2021.
Ryerson AB , Rice CE , Hung MC , Patel SA , Weeks JD , Kriss JL , Peacock G , Lu PJ , Asif AF , Jackson HL , Singleton JA . MMWR Morb Mortal Wkly Rep 2021 70 (39) 1365-1371 Estimates from the 2019 American Community Survey (ACS) indicated that 15.2% of adults aged ≥18 years had at least one reported functional disability (1). Persons with disabilities are more likely than are those without disabilities to have chronic health conditions (2) and also face barriers to accessing health care (3). These and other health and social inequities have placed persons with disabilities at increased risk for COVID-19-related illness and death, yet they face unique barriers to receipt of vaccination (4,5). Although CDC encourages that considerations be made when expanding vaccine access to persons with disabilities,* few public health surveillance systems measure disability status. To describe COVID-19 vaccination status and intent, as well as perceived vaccine access among adults by disability status, data from the National Immunization Survey Adult COVID Module (NIS-ACM) were analyzed. Adults with a disability were less likely than were those without a disability to report having received ≥1 dose of COVID-19 vaccine (age-adjusted prevalence ratio [aPR] = 0.88; 95% confidence interval [CI] = 0.84-0.93) but more likely to report they would definitely get vaccinated (aPR = 1.86; 95% CI = 1.43-2.42). Among unvaccinated adults, those with a disability were more likely to report higher endorsement of vaccine as protection (aPR = 1.29; 95% CI = 1.16-1.44), yet more likely to report it would be or was difficult to get vaccinated than did adults without a disability (aPR = 2.69; 95% CI = 2.16-3.34). Reducing barriers to vaccine scheduling and making vaccination sites more accessible might improve vaccination rates among persons with disabilities. |
Spending on young children with autism spectrum disorder in employer-sponsored plans, 2011-2017
Grosse SD , Ji X , Nichols P , Zuvekas SH , Rice CE , Yeargin-Allsopp M . Psychiatr Serv 2020 72 (1) 16-22 OBJECTIVE: Rapid increases in the prevalence of autism spectrum disorder (ASD) and increased access to intensive behavioral interventions have likely increased health care spending. This study estimated recent changes in spending among privately insured children with and without current ASD. METHODS: A repeated cross-sections analysis of 2011-2017 claims data from large-employer-sponsored health plans assessed changes in annual expenditures by service type for children ages 3-7 enrolled for ≥1 year and with two or more claims with ASD billing codes within a calendar year and for all other children. RESULTS: Mean spending per child with a current-year ASD diagnosis increased by 51% in 2017 U.S. dollars, from roughly $13,000 in 2011 to $20,000 in 2017. Among children who did not meet the current-year ASD case definition, per-child spending increased by 8%. Spending on children with ASD accounted for 41% of spending growth for children ages 3-7 during 2011-2017. Outpatient behavioral intervention-related spending per child with ASD increased by 376%, from $1,746 in 2011 to $8,317 in 2017; spending on all other services increased by 2%. Their share of behavioral intervention-related spending increased from 13.2% in 2011 to 41.7% in 2017. In 2011, 2.5% of children with current-year ASD diagnoses incurred ≥$20,000 in outpatient behavioral intervention-related spending, which increased to 14.4% in 2017. CONCLUSIONS: During 2011-2017, spending increased six times as much for privately insured children ages 3-7 with current-year ASD as for children without ASD, largely from increased behavioral intervention-related spending. One in seven children received at least $20,000 in services in 2017. |
DSM-5 criteria for autism spectrum disorder maximizes diagnostic sensitivity and specificity in preschool children
Wiggins LD , Rice CE , Barger B , Soke GN , Lee LC , Moody E , Edmondson-Pretzel R , Levy SE . Soc Psychiatry Psychiatr Epidemiol 2019 54 (6) 693-701 PURPOSE: The criteria for autism spectrum disorder (ASD) were revised in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM). The objective of this study was to compare the sensitivity and specificity of DSM-IV-Text Revision (DSM-IV-TR) and DSM-5 definitions of ASD in a community-based sample of preschool children. METHODS: Children between 2 and 5 years of age were enrolled in the Study to Explore Early Development-Phase 2 (SEED2) and received a comprehensive developmental evaluation. The clinician(s) who evaluated the child completed two diagnostic checklists that indicated the presence and severity of DSM-IV-TR and DSM-5 criteria. Definitions for DSM-5 ASD, DSM-IV-TR autistic disorder, and DSM-IV-TR Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) were created from the diagnostic checklists. RESULTS: 773 children met SEED2 criteria for ASD and 288 met criteria for another developmental disorder (DD). Agreement between DSM-5 and DSM-IV-TR definitions of ASD were good for autistic disorder (0.78) and moderate for PDD-NOS (0.57 and 0.59). Children who met DSM-IV-TR autistic disorder but not DSM-5 ASD (n = 71) were more likely to have mild ASD symptoms, or symptoms accounted for by another disorder. Children who met PDD-NOS but not DSM-5 ASD (n = 66), or vice versa (n = 120) were less likely to have intellectual disability and more likely to be female. Sensitivity and specificity were best balanced with DSM-5 ASD criteria (0.95 and 0.78, respectively). CONCLUSIONS: The DSM-5 definition of ASD maximizes diagnostic sensitivity and specificity in the SEED2 sample. These findings support the DSM-5 conceptualization of ASD in preschool children. |
Trends in special education eligibility among children with autism spectrum disorder, 2002-2010
Rubenstein E , Daniels J , Schieve LA , Christensen DL , Van Naarden Braun K , Rice CE , Bakian AV , Durkin MS , Rosenberg SA , Kirby RS , Lee LC . Public Health Rep 2017 133 (1) 33354917739582 OBJECTIVE: Although data on publicly available special education are informative and offer a glimpse of trends in autism spectrum disorder (ASD) and use of educational services, using these data for population-based public health monitoring has drawbacks. Our objective was to evaluate trends in special education eligibility among 8-year-old children with ASD identified in the Autism and Developmental Disabilities Monitoring Network. METHODS: We used data from 5 Autism and Developmental Disabilities Monitoring Network sites (Arizona, Colorado, Georgia, Maryland, and North Carolina) during 4 surveillance years (2002, 2006, 2008, and 2010) and compared trends in 12 categories of special education eligibility by sex and race/ethnicity. We used multivariable linear risk regressions to evaluate how the proportion of children with a given eligibility changed over time. RESULTS: Of 6010 children with ASD, more than 36% did not receive an autism eligibility in special education in each surveillance year. From surveillance year 2002 to surveillance year 2010, autism eligibility increased by 3.6 percentage points ( P = .09), and intellectual disability eligibility decreased by 4.6 percentage points ( P < .001). A greater proportion of boys than girls had an autism eligibility in 2002 (56.3% vs 48.8%). Compared with other racial/ethnic groups, Hispanic children had the largest increase in proportion with autism eligibility from 2002 to 2010 (15.4%, P = .005) and the largest decrease in proportion with intellectual disability (-14.3%, P = .004). CONCLUSION: Although most children with ASD had autism eligibility, many received special education services under other categories, and racial/ethnic disparities persisted. To monitor trends in ASD prevalence, public health officials need access to comprehensive data collected systematically, not just special education eligibility. |
Reported wandering behavior among children with autism spectrum disorder and/or intellectual disability
Rice CE , Zablotsky B , Avila RM , Colpe LJ , Schieve LA , Pringle B , Blumberg SJ . J Pediatr 2016 174 232-239.e2 OBJECTIVE: To characterize wandering, or elopement, among children with autism spectrum disorder (ASD) and intellectual disability. STUDY DESIGN: Questions on wandering in the previous year were asked of parents of children with ASD with and without intellectual disability and children with intellectual disability without ASD as part of the 2011 Survey of Pathways to Diagnosis and Services. The Pathways study sample was drawn from the much larger National Survey of Children with Special Health Care Needs conducted in 2009-2010. RESULTS: For children with special healthcare needs diagnosed with either ASD, intellectual disability, or both, wandering or becoming lost during the previous year was reported for more than 1 in 4 children. Wandering was highest among children with ASD with intellectual disability (37.7%) followed by children with ASD without intellectual disability (32.7%), and then children with intellectual disability without ASD (23.7%), though the differences between these groups were not statistically significant. CONCLUSIONS: This study affirms that wandering among children with ASD, regardless of intellectual disability status, is relatively common. However, wandering or becoming lost in the past year was also reported for many children with intellectual disability, indicating the need to broaden our understanding of this safety issue to other developmental disabilities. |
Brief report: independent validation of autism spectrum disorder case status in the Utah Autism and Developmental Disabilities Monitoring (ADDM) Network site
Bakian AV , Bilder DA , Carbone PS , Hunt TD , Petersen B , Rice CE . J Autism Dev Disord 2015 45 (3) 873-80 An independent validation was conducted of the Utah Autism and Developmental Disabilities Monitoring Network's (UT-ADDM) classification of children with autism spectrum disorder (ASD). UT-ADDM final case status (n = 90) was compared with final case status as determined by independent external expert reviewers (EERs). Inter-rater reliability (ICC = 0.84), specificity [0.83 (95 % CI 0.74-0.90)], and sensitivity [0.99 (95 % CI 0.96-1.00)] were high for ASD case versus non-case classification between UT-ADDM and EER. At least one EER disagreed with UT-ADDM on ASD final case status on nine out of 30 records; however, all three EERs disagreed with UT-ADDM for only one record. Findings based on limited data suggest that children with ASD as identified by UT-ADDM are consistently classified as ASD cases by independent autism experts. |
Age at autism spectrum disorder (ASD) diagnosis by race, ethnicity, and primary household language among children with special health care needs, United States, 2009-2010
Jo H , Schieve LA , Rice CE , Yeargin-Allsopp M , Tian LH , Blumberg SJ , Kogan MD , Boyle CA . Matern Child Health J 2015 19 (8) 1687-97 We examined prevalence of diagnosed autism spectrum disorder (ASD) and age at diagnosis according to child's race/ethnicity and primary household language. From the 2009-2010 National Survey of Children with Special Health Care Needs, we identified 2729 3-17-year-old US children whose parent reported a current ASD diagnosis. We compared ASD prevalence, mean diagnosis age, and percentage with later diagnoses (≥5 years) across racial/ethnic/primary household language groups: non-Hispanic-white, any language (NHW); non-Hispanic-black, any language (NHB); Hispanic-any-race, English (Hispanic-English); and Hispanic-any-race, other language (Hispanic-Other). We assessed findings by parent-reported ASD severity level and adjusted for family sociodemographics. ASD prevalence estimates were 15.3 (NHW), 10.4 (NHB), 14.1 (Hispanic-English), and 5.2 (Hispanic-Other) per 1000 children. Mean diagnosis age was comparable across racial/ethnic/language groups for 3-4-year-olds. For 5-17-year-olds, diagnosis age varied by race/ethnicity/language and also by ASD severity. In this group, NHW children with mild/moderate ASD had a significantly higher proportion (50.8 %) of later diagnoses than NHB (33.5 %) or Hispanic-Other children (18.0 %). However, NHW children with severe ASD had a comparable or lower (albeit non-significant) proportion (16.4 %) of later diagnoses than NHB (37.8 %), Hispanic-English (30.8 %), and Hispanic-Other children (12.0 %). While NHW children have comparable ASD prevalence and diagnosis age distributions as Hispanic-English children, they have both higher prevalence and proportion of later diagnoses than NHB and Hispanic-Other children. The diagnosis age findings were limited to mild/moderate cases only. Thus, the prevalence disparity might be primarily driven by under-representation (potentially under-identification) of older children with mild/moderate ASD in the two minority groups. |
Using standardized diagnostic instruments to classify children with autism in the Study to Explore Early Development
Wiggins LD , Reynolds A , Rice CE , Moody EJ , Bernal P , Blaskey L , Rosenberg SA , Lee LC , Levy SE . J Autism Dev Disord 2014 45 (5) 1271-80 The Study to Explore Early Development (SEED) is a multi-site case-control study designed to explore the relationship between autism spectrum disorder (ASD) phenotypes and etiologies. The goals of this paper are to (1) describe the SEED algorithm that uses the Autism Diagnostic Interview-Revised (ADI-R) and Autism Diagnostic Observation Schedule (ADOS) to classify children with ASD, (2) examine psychometric properties of different ASD classification methods, including the SEED method that incorporates rules for resolving ADI-R and ADOS discordance, and (3) determine whether restricted interests and repetitive behaviors were noted for children who had instrument discordance resolved using ADI-R social and communication scores. Results support the utility of SEED criteria when well-defined groups of children are an important clinical or research outcome. |
Screening for developmental delays among young children - National Survey of Children's Health, United States, 2007
Rice CE , Naarden Braun KV , Kogan MD , Smith C , Kavanagh L , Strickland B , Blumberg SJ . MMWR Suppl 2014 63 (2) 27-35 Early childhood development typically follows a trajectory of achieving physical, cognitive, communication, social-emotional, and self-help milestones within a specified age range. Although most children reach these milestones within a similar range, others exhibit mild to severe developmental delays that indicate potential developmental disabilities. Developmental disabilities are a group of conditions caused by an impairment in one or more developmental domains (e.g., physical, learning, communication, behavior, or self-help). Developmental disabilities can become evident during the prenatal period through age 22 years, affect day-to-day functioning, and usually are lifelong. Approximately 15% of children aged 3-17 years in 2008 were estimated to have developmental disabilities of varying severity, such as language or learning disorders, intellectual disabilities, cerebral palsy, seizures, hearing loss, blindness, autism spectrum disorder (ASD), or other developmental delays. |
Potential impact of DSM-5 criteria on autism spectrum disorder prevalence estimates
Maenner MJ , Rice CE , Arneson CL , Cunniff C , Schieve LA , Carpenter LA , Van Naarden Braun K , Kirby RS , Bakian AV , Durkin MS . JAMA Psychiatry 2014 71 (3) 292-300 IMPORTANCE: The DSM-5 contains revised diagnostic criteria for autism spectrum disorder (ASD) from the DSM-IV-TR. Potential impacts of the new criteria on ASD prevalence are unclear. OBJECTIVE: To assess potential effects of the DSM-5 ASD criteria on ASD prevalence estimation by retrospectively applying the new criteria to population-based surveillance data collected for previous ASD prevalence estimation. DESIGN, SETTING, AND PARTICIPANTS: Cross-sectional, population-based ASD surveillance based on clinician review of coded behaviors documented in children's medical and educational evaluations from 14 geographically defined areas in the United States participating in the Autism and Developmental Disabilities Monitoring (ADDM) Network in 2006 and 2008. This study included 8-year-old children living in ADDM Network study areas in 2006 or 2008, including 644 883 children under surveillance, of whom 6577 met surveillance ASD case status based on the DSM-IV-TR. MAIN OUTCOMES AND MEASURES: Proportion of children meeting ADDM Network ASD criteria based on the DSM-IV-TR who also met DSM-5 criteria; overall prevalence of ASD using DSM-5 criteria. RESULTS: Among the 6577 children classified by the ADDM Network as having ASD based on the DSM-IV-TR, 5339 (81.2%) met DSM-5 ASD criteria. This percentage was similar for boys and girls but higher for those with than without intellectual disability (86.6% and 72.5%, respectively; P < .001). A total of 304 children met DSM-5 ASD criteria but not current ADDM Network ASD case status. Based on these findings, ASD prevalence per 1000 for 2008 would have been 10.0 (95% CI, 9.6-10.3) using DSM-5 criteria compared with the reported prevalence based on DSM-IV-TR criteria of 11.3 (95% CI, 11.0-11.7). CONCLUSIONS AND RELEVANCE: Autism spectrum disorder prevalence estimates will likely be lower under DSM-5 than under DSM-IV-TR diagnostic criteria, although this effect could be tempered by future adaptation of diagnostic practices and documentation of behaviors to fit the new criteria. |
Frequency and pattern of documented diagnostic features and the age of autism identification
Maenner MJ , Schieve LA , Rice CE , Cunniff C , Giarelli E , Kirby RS , Lee LC , Nicholas JS , Wingate MS , Durkin MS . J Am Acad Child Adolesc Psychiatry 2013 52 (4) 401-413 e8 OBJECTIVE: The DSM-IV-TR specifies 12 behavioral features that can occur in hundreds of possible combinations to meet diagnostic criteria for autism spectrum disorder (ASD). This paper describes the frequency and variability with which the 12 behavioral features are documented in a population-based cohort of 8-year-old children under surveillance for ASD, and examines whether documentation of certain features, alone or in combination with other features, is associated with earlier age of community identification of ASD. METHOD: Statistical analysis of behavioral features documented for a population-based sample of 2,757 children, 8 years old, with ASD in 11 geographically-defined areas in the US participating in the Autism and Developmental Disabilities Monitoring Network in 2006. RESULTS: The median age at ASD identification was inversely associated with the number of documented behavioral features, decreasing from 8.2 years for children with only seven behavioral features to 3.8 years for children with all 12. Documented impairments in nonverbal communication, pretend play, inflexible routines, and repetitive motor behaviors were associated with earlier identification, whereas impairments in peer relations, conversational ability, and idiosyncratic speech were associated with later identification. CONCLUSIONS: The age dependence of some of the behavioral features leading to an autism diagnosis, as well as the inverse association between age at identification and number of behavioral features documented, have implications for efforts to improve early identification. Progress in achieving early identification and provision of services for children with autism may be limited for those with fewer ASD behavioral features, as well as features likely to be detected at later ages. |
Genomics and autism spectrum disorder.
Johnson NL , Giarelli E , Lewis C , Rice CE . J Nurs Scholarsh 2013 45 (1) 69-78 PURPOSE: To present the current state of the evidence regarding translation of genetics (the study of single genes) and genomics (the study of all genes and gene-gene or gene-environment interactions) into health care of children with autism spectrum disorder (ASD). METHODS: This article presents an overview of ASD as an international health challenge, the emerging science related to broad diagnostic criteria, and the role of the nurse in research, education, and practice. FINDINGS: Much progress is being made in the understanding of genetics and genomics of ASD. Environmental factors are thought to contribute to the risk of developing ASD by interacting with a number of genes in different ways, thus suggesting causal heterogeneity. The rising identified prevalence of ASD, the changing diagnostic criteria for ASD, and the complexity of the core and associated features have made it difficult to define the ASD phenotype (observable behaviors that result from gene-environment interaction). Because early identification improves opportunities for intervention, researchers are looking for a useful biomarker to detect ASD. This search is complicated by the likelihood that there are multiple causes for multiple expressions that are defined as the autism spectrum. CONCLUSIONS: To date, genetic and genomic research on ASD have underscored the complexity of the causes of ASD indicating that there are very complex genetic processes involved that are still not well understood. CLINICAL RELEVANCE: Nurses will benefit from new knowledge related to early identification, diagnosis, and implications for the family to promote early intervention. Families who have a child with ASD will require nursing support for advocacy for optimal health outcomes. |
Autism spectrum disorder reclassified: a second look at the 1980s Utah/UCLA autism epidemiologic study
Miller JS , Bilder D , Farley M , Coon H , Pinborough-Zimmerman J , Jenson W , Rice CE , Fombonne E , Pingree CB , Ritvo E , Ritvo RA , McMahon WM . J Autism Dev Disord 2012 43 (1) 200-10 The purpose of the present study was to re-examine diagnostic data from a state-wide autism prevalence study (n = 489) conducted in the 1980s to investigate the impact of broader diagnostic criteria on autism spectrum disorder (ASD) case status. Sixty-four (59 %) of the 108 originally "Diagnosed Not Autistic" met the current ASD case definition. The average IQ estimate in the newly identified group (IQ = 35.58; SD = 23.01) was significantly lower than in the original group (IQ = 56.19 SD = 21.21; t = 5.75; p < .0001). Today's diagnostic criteria applied to participants ascertained in the 1980s identified more cases of autism with intellectual disability. The current analysis puts this historic work into context and highlights differences in ascertainment between epidemiological studies performed decades ago and those of today. |
Retention of autism spectrum diagnoses by community professionals: findings from the Autism and Developmental Disabilities Monitoring Network, 2000 and 2006
Wiggins LD , Baio J , Schieve L , Lee LC , Nicholas J , Rice CE . J Dev Behav Pediatr 2012 33 (5) 387-95 OBJECTIVE: Past research is inconsistent in the stability of autism spectrum disorder (ASD) diagnoses. The authors therefore sought to examine the proportion of children identified from a population-based surveillance system that had a change in classification from ASD to non-ASD and factors associated with such changes. METHODS: Children with a documented age of first ASD diagnosis noted in surveillance records by a community professional (n = 1392) were identified from the Autism and Developmental Disabilities Monitoring Network. Children were considered to have a change in classification if an ASD was excluded after the age of first recorded ASD diagnosis. Child and surveillance factors were entered into a multivariable regression model to determine factors associated with diagnostic change. RESULTS: Only 4% of our sample had a change in classification from ASD to non-ASD noted in evaluation records. Factors associated with change in classification from ASD to non-ASD were timing of first ASD diagnosis at 30 months or younger, onset other than developmental regression, presence of specific developmental delays, and participation in a special needs classroom other than autism at 8 years of age. CONCLUSIONS: Our results found that children with ASDs are likely to retain an ASD diagnosis, which underscores the need for continued services. Children diagnosed at 30 months or younger are more likely to experience a change in classification from ASD to non-ASD than children diagnosed at 31 months or older, suggesting earlier identification of ASD symptoms may be associated with response to intervention efforts or increased likelihood for overdiagnosis. |
Concurrent medical conditions and health care use and needs among children with learning and behavioral developmental disabilities, National Health Interview Survey, 2006-2010
Schieve LA , Gonzalez V , Boulet SL , Visser SN , Rice CE , Braun KV , Boyle CA . Res Dev Disabil 2011 33 (2) 467-476 Studies document various associated health risks for children with developmental disabilities (DDs). Further study is needed by disability type. Using the 2006-2010 National Health Interview Surveys, we assessed the prevalence of numerous medical conditions (e.g. asthma, frequent diarrhea/colitis, seizures), health care use measures (e.g. seeing a medical specialist and >9 office visits in past year), health impact measures (e.g. needing help with personal care), and selected indicators of unmet health needs (e.g. unable to afford needed prescription medications) among a nationally representative sample of children ages 3-17 years, with and without DDs. Children in four mutually exclusive developmental disability groups: autism (N=375), intellectual disability (ID) without autism (N=238); attention-deficit/hyperactivity disorder (ADHD) without autism or ID (N=2901); and learning disability (LD) or other developmental delay without ADHD, autism, or ID (N=1955); were compared to children without DDs (N=35,775) on each condition or health care measure of interest. Adjusted odds ratios (aORs) were calculated from weighted logistic regression models that accounted for the complex sample design. Prevalence estimates for most medical conditions examined were moderately to markedly higher for children in all four DD groups than children without DDs. Most differences were statistically significant after adjustment for child sex, age, race/ethnicity, and maternal education. Children in all DD groups also had significantly higher estimates for health care use, impact, and unmet needs measures than children without DDs. This study provides empirical evidence that children with DDs require increased pediatric and specialist services, both for their core functional deficits and concurrent medical conditions. |
The changing prevalence of the autism spectrum disorders
Rice CE . Am Fam Physician 2011 83 (5) 515 Autism spectrum disorders are a group of developmental disabilities characterized by atypical development in socialization, communication, and behavior. The term autism spectrum disorders describes three of the five pervasive developmental disorders, including autistic disorder, Asperger syndrome, and pervasive developmental disorder—not otherwise specified. Symptoms of autism spectrum disorders typically are present before three years of age and often are accompanied by unusual patterns in learning, attention, and sensory processing.1 Based on the most recent report by the Autism and Developmental Disabilities Monitoring (ADDM) Network, an average of one in 110 children was identified with autism spectrum disorders, which translates to about 1 percent of children.2 For every girl, four or five boys were affected by the autism spectrum disorders. Less than one-half of the children with autism spectrum disorders also had an intellectual disability, and 47 percent were diagnosed with autistic disorder by eight years of age. | We know that the number of persons receiving services for autism spectrum disorders has increased substantially since the early 1990s,3,4 but are there really more children today with the cluster of behaviors that make up the autism spectrum disorders than there were in the past? Debates on this issue typically have been dichotomized to indicate that increases in the prevalence of autism spectrum disorders must be explained by changes in identification patterns or by a true increase in symptoms among children born in more recent times. We do know that the way autism spectrum disorders are defined and identified makes a difference in the prevalence estimates. From the time autism was first described in the 1940s until the 1980s, the term primarily referred to more severely affected persons with autistic disorder and was thought to be rare, affecting approximately one in every 2,000 children (0.05 percent).5 Current estimates on the prevalence of autism spectrum disorders based on expanded definitions from the Diagnostic and Statistical Manual of Mental Disorders, 4th ed., are approximately 10 to 20 times higher than those using earlier criteria. Some of the most recent studies have documented a prevalence of more than 1 percent of children in multiple areas of the world,2,6–8 with symptoms identified in 2.7 percent of children.9 One effort to retrospectively apply more modern criteria to an older study estimated a prevalence of about four per 1,000 children, indicating that older studies underestimated prevalence because they considered a more strict interpretation of what autism and related disorders look like.10 |
Risk for cognitive deficit in a population-based sample of U.S. children with autism spectrum disorders: variation by perinatal health factors
Schieve LA , Baio J , Rice CE , Durkin M , Kirby RS , Drews-Botsch C , Miller LA , Nicholas JS , Cunniff CM . Disabil Health J 2010 3 (3) 202-212 BACKGROUND: From 30% to 60% of children with an autism spectrum disorder (ASD) have an IQ measure that falls in the intellectual disability (ID) range. It is not well studied whether, for children within this ASD subgroup, there is variation in the risk for low IQ based on a child's perinatal risk factors. OBJECTIVE/HYPOTHESES: We assessed whether preterm delivery and term small-for-gestational-age (tSGA) were associated with various measures of cognitive deficit among children with ASDs. METHODS: A sample of 1129 singleton children born in 1994 and identified through school and health record review as having an ASD by age 8 years were selected from a U.S. population-based surveillance network. Mean IQ and dichotomous IQ outcomes indicating various levels of ID were examined according to whether a child was preterm (<37 weeks' gestation) or tSGA (term delivery and birth weight <10th percentile for gestational age of a U.S. referent). Results for the total sample and within race-ethnicity/maternal education strata were adjusted for child sex and ASD subtype classification. RESULTS: Mean IQ was significantly (p < .05) lower in children delivered preterm (69.5) than term (74.5) and tSGA (69.3) than term appropriate-for gestational age (75.3). In stratified analyses, the preterm-IQ association was significant only among non-Hispanic white (NHW) children with maternal education at birth of high school or less; adjusted mean IQ was 8 points lower among those delivered preterm (65.4) than term (73.8). Term-SGA was associated with a significant 8-point deficit in adjusted mean IQ (75.5 vs. 83.8) in NHW children with maternal education greater than high school and a 6-point deficit that approached significance (68.4 vs. 74.5, p = 0.10) in NHW children with maternal education of high school or less. Non-Hispanic black children in both maternal education groups had significantly lower mean IQs than NHW children with little variation by preterm or tSGA. CONCLUSIONS: In children with ASDs, the risk for concurrent ID or IQ deficit is associated with both preterm delivery and tSGA; these associations may vary by race-ethnicity and SES. Further studies of ASD-ID co-occurrence and the effectiveness of intervention strategies should consider both perinatal and sociodemographic factors. 2010 Elsevier Inc. All rights reserved. |
Autism spectrum disorder and co-occurring developmental, psychiatric, and medical conditions among children in multiple populations of the United States
Levy SE , Giarelli E , Lee LC , Schieve LA , Kirby RS , Cunniff C , Nicholas J , Reaven J , Rice CE . J Dev Behav Pediatr 2010 31 (4) 267-75 BACKGROUND: Autism spectrum disorders (ASDs) often co-occur with other developmental, psychiatric, neurologic, or medical diagnoses. OBJECTIVE: This study examined co-occurring non-ASD diagnoses and symptoms in a population-based cohort of 8 year olds identified with ASD. METHOD: Data on 2,568 children meeting surveillance case definition for ASD were collected by a multi-site surveillance program. Information was systematically abstracted and reviewed from existing health and education source records and systematically entered into a summary record in a secure database. RESULTS: Eighty-one percent of study children were male; 63% white, 23% black, 14% Hispanic, Asian, or not stated. When age of ASD classification was available, 20% were classified before age 3 years, 36% between ages 3 and 5 years, and 44% after age 5 years. The co-occurrence of ≥1 non-ASD developmental diagnoses was 83%, ≥1 psychiatric diagnoses was 10%, ≥1 neurologic diagnoses was 16%, and at least one possibly causative genetic or neurologic diagnosis was 4%. Children with a previous ASD classification and co-occurring psychiatric or neurologic conditions were more likely to be diagnosed or classified at a later age. Each category of co-occurring non-ASD diagnosis was significantly increased in children whose records did not include an ASD diagnosis or educational classification but who met surveillance criteria for ASD. CONCLUSIONS: These data highlight the need for clinicians to keep in mind the high prevalence of associated diagnoses with an ASD diagnosis, and the possibility that in younger children other symptoms or disorders may be masking or obscuring core symptoms of ASD, which would lead to a diagnosis. |
Developmental regression in children with an autism spectrum disorder identified by a population-based surveillance system
Wiggins LD , Rice CE , Baio J . Autism 2009 13 (4) 357-74 This study evaluated the phenomenon of autistic regression using population-based data. The sample comprised 285 children who met the autism spectrum disorder (ASD) case definition within an ongoing surveillance program. Results indicated that children with a previously documented ASD diagnosis had higher rates of autistic regression than children who met the ASD surveillance definition but did not have a clearly documented ASD diagnosis in their records (17-26 percent of surveillance cases). Most children regressed around 24 months of age and boys were more likely to have documented regression than girls. Half of the children with regression had developmental concerns noted prior to the loss of skills. Moreover, children with autistic regression were more likely to show certain associated features, including cognitive impairment.These data indicate that some children with ASD experience a loss of skills in the first few years of life and may have a unique symptom profile. |
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