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Research Studies is a monthly compilation of research articles funded by AHRQ or authored by AHRQ researchers and recently published in journals or newsletters.
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1 to 21 of 21 Research Studies Displayed
Hickey EJ, Stransky M, Kuhn J
Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder.
This study examined trajectories of parenting stress, coping, and perceived family impact over time throughout the autism diagnostic process among Hispanic and non-Hispanic families. Findings showed that Hispanic families reported lower levels of parenting stress, coping, and negative family impact across time. Further, there were differences in the change in use of coping and the amount of negative family impact reported between Hispanic and non-Hispanic parents over time.
AHRQ-funded; HS022242.
Citation:
Hickey EJ, Stransky M, Kuhn J .
Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder.
Autism 2021 Aug;25(6):1694-708. doi: 10.1177/13623613211001611..
Keywords:
Children/Adolescents, Autism, Stress, Behavioral Health, Racial / Ethnic Minorities
Zuvekas SH, Grosse SD, Lavelle TA
Healthcare costs of pediatric autism spectrum disorder in the United States, 2003-2015.
Published healthcare cost estimates for children with autism spectrum disorder (ASD) vary widely. One possible contributor is different methods of case ascertainment. In this study, autism spectrum disorder (ASD) case status was determined using two sources of parent reports among 45,944 children ages 3-17 years in the Medical Expenditure Panel Survey (MEPS) linked to the National Health Interview Survey (NHIS) Sample Child Core questionnaire. In this paper, the investigators describe their process and conclusions.
AHRQ-authored.
Citation:
Zuvekas SH, Grosse SD, Lavelle TA .
Healthcare costs of pediatric autism spectrum disorder in the United States, 2003-2015.
J Autism Dev Disord 2021 Aug;51(8):2950-58. doi: 10.1007/s10803-020-04704-z..
Keywords:
Medical Expenditure Panel Survey (MEPS), Children/Adolescents, Autism, Healthcare Costs, Behavioral Health
Feinberg E, Kuhn J, Eilenberg JS
Improving family navigation for children with autism: a comparison of two pilot randomized controlled trials.
This study looked at impacts of a modification to a pilot program called Family Navigation to help low-income, minority children needing autism-related diagnostic services receive those services. An advisory group recommended modifications to recruitment criteria and study conditions. 40 parent-child dyad participants were randomized between the two pilots to receive usual care (UC) or modified FN. Participant enrollment, satisfaction with clinical care, and timely completion of the diagnostic assessment were compared. Recruitment improved significantly with the modified protocol (4.8% vs. 19.5%) and no participants were excluded from study enrollment compared to the first pilot (43.6%). Families in the second pilot were more likely to complete diagnostic assessment and report greater satisfaction with clinical care.
AHRQ-funded; HS022155; HS022242.
Citation:
Feinberg E, Kuhn J, Eilenberg JS .
Improving family navigation for children with autism: a comparison of two pilot randomized controlled trials.
Acad Pediatr 2021 Mar;21(2):265-71. doi: 10.1016/j.acap.2020.04.007..
Keywords:
Children/Adolescents, Autism, Patient-Centered Healthcare, Care Coordination, Racial / Ethnic Minorities, Low-Income, Patient and Family Engagement, Chronic Conditions
Grosse SD, Ji X, Zuvekas
Spending on young children with autism spectrum disorder in employer-sponsored plans, 2011-2017.
This study looked at spending trends on young children with autism spectrum disorder (ASD) in employer-sponsored plans from 2011 to 2017. This cross-section analysis examined claims data from large-employer-sponsored health plans and assessed changes in annual expenditures by service type for children ages 3-5 enrolled for 1 year or more, and with two or more claims with ASD billing codes within a calendar year and compared it to all children. Mean spending per children with ASD increased by 51% in 2017 US dollars in 2017, while for all children the increase was 8%. ASD spending accounted for 41% of spending growth for children ages 3-7 during 2011-2017. Outpatient behavioral intervention-related spending increased by 376% during the time period, while spending on all other services increased by 2%.
AHRQ-authored.
Citation:
Grosse SD, Ji X, Zuvekas .
Spending on young children with autism spectrum disorder in employer-sponsored plans, 2011-2017.
Psychiatr Serv 2021 Jan;72(1):16-22. doi: 10.1176/appi.ps.202000099.
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Keywords:
Children/Adolescents, Autism, Health Insurance, Healthcare Costs
Downs SM, Bauer NS, Saha C
Effect of a computer-based decision support intervention on autism spectrum disorder screening in pediatric primary care clinics: a cluster randomized clinical trial.
This study examined outcomes for implementation of a decision support system called CHICA (Child Health Improvement Through Computer Automation) to improve screening rates for autism in children aged 18 to 24 months. A random sample of 274 children in four urban clinics was used. Two clinics participated in the intervention, and two served as controls. Because participating clinics requested intervention be discontinued for children aged 18 months, only results for those aged 24 months was analyzed. Of the 263 children with reviewed results, 92% were enrolled in Medicaid, 52.5% were African American, and 36.5% were Hispanic. Screening rates increased from 0% at baseline to 100% in 24 months during the study period of November 2010 to November 2012. Screening results were positive for 265 of 980 children screened by CHICA in the time period, with 2 children from the intervention group positively diagnosed in the time frame of the study.
AHRQ-funded; HS018453.
Citation:
Downs SM, Bauer NS, Saha C .
Effect of a computer-based decision support intervention on autism spectrum disorder screening in pediatric primary care clinics: a cluster randomized clinical trial.
JAMA Netw Open 2019 Dec 2;2(12):e1917676. doi: 10.1001/jamanetworkopen.2019.17676..
Keywords:
Autism, Clinical Decision Support (CDS), Decision Making, Health Information Technology (HIT), Primary Care, Children/Adolescents, Screening
Knutsen J, Crossman M, Perrin J
Sex differences in restricted repetitive behaviors and interests in children with autism spectrum disorder: an Autism Treatment Network study.
Researchers examined sex differences in clinically identified (Autism Diagnostic Observation Schedule) restricted and repetitive behavior symptoms of age-matched and intelligence quotient-matched female and male children with autism spectrum disorder. Their findings identified key restricted and repetitive behavior similarities and differences among young females and males with autism spectrum disorder and emphasized the need for a deeper understanding of the female autism phenotype.
AHRQ-funded; HS022986; HS000063.
Citation:
Knutsen J, Crossman M, Perrin J .
Sex differences in restricted repetitive behaviors and interests in children with autism spectrum disorder: an Autism Treatment Network study.
Autism 2019 May;23(4):858-68. doi: 10.1177/1362361318786490..
Keywords:
Autism, Behavioral Health, Children/Adolescents, Patient-Centered Outcomes Research, Sex Factors
Duvall SW, Lindly O, Zuckerman K
Ethical implications for providers regarding cannabis use in children with autism spectrum disorders.
In this paper, the authors present commentary on the ethical implications of cannabis use in children with autism spectrum disorder and severe self-harm behaviors. They discuss ethical analysis that includes harm reduction, health concerns, and information sharing.
AHRQ-funded; HS000063.
Citation:
Duvall SW, Lindly O, Zuckerman K .
Ethical implications for providers regarding cannabis use in children with autism spectrum disorders.
Pediatrics 2019 Feb;143(2). doi: 10.1542/peds.2018-0558..
Keywords:
Autism, Children/Adolescents, Complementary and Alternative Medicine, Neurological Disorders
Fogler J, Kuhn J, Prock L
Diagnostic uncertainty in a complex young man: autism versus psychosis.
This paper provides a case study of boy, diagnosed with attention deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) who was born in Vietnam to a mother with mental illness.
AHRQ-funded; HS022242.
Citation:
Fogler J, Kuhn J, Prock L .
Diagnostic uncertainty in a complex young man: autism versus psychosis.
J Dev Behav Pediatr 2019 Jan;40(1):72-74. doi: 10.1097/dbp.0000000000000635..
Keywords:
Children/Adolescents, Diagnosis, Autism, Behavioral Health, Case Study
Gu Y, Leroy G, Pettygrove S
Optimizing corpus creation for training word embedding in low resource domains: a case study in Autism Spectrum Disorder (ASD).
Automating the extraction of behavioral criteria indicative of Autism Spectrum Disorder (ASD) in electronic health records (EHRs) can contribute significantly to the effort to monitor the condition. Word embedding algorithms such as Word2Vec can encode semantic meanings of words in vectors and assist in automated vocabulary discovery from EHRs. However, text available for training word embeddings for ASD is miniscule compared to the billions of tokens typically used. In this study, the investigators evaluated the importance of corpus specificity versus size and hypothesized that for specific domains small corpora can generate excellent word embeddings.
AHRQ-funded; HS024988.
Citation:
Gu Y, Leroy G, Pettygrove S .
Optimizing corpus creation for training word embedding in low resource domains: a case study in Autism Spectrum Disorder (ASD).
AMIA Annu Symp Proc 2018 Dec 5;2018:508-17..
Keywords:
Autism, Electronic Health Records (EHRs), Health Information Technology (HIT)
Leroy G, Gu Y, Pettygrove S
Automated extraction of diagnostic criteria from electronic health records for autism spectrum disorders: development, evaluation, and application.
The objective of this study was to automatically extract from EHRs the description of behaviors noted by the clinicians in evidence of the diagnostic criteria in the Diagnostic and Statistical Manual of Mental Disorders (DSM). The investigators concluded that their results demonstrated that natural language processing can support large-scale analysis useful for autism spectrum disorder surveillance and research.
AHRQ-funded; HS024988.
Citation:
Leroy G, Gu Y, Pettygrove S .
Automated extraction of diagnostic criteria from electronic health records for autism spectrum disorders: development, evaluation, and application.
J Med Internet Res 2018 Nov 7;20(11):e10497. doi: 10.2196/10497..
Keywords:
Autism, Electronic Health Records (EHRs)
Zuckerman KE, Lindly OJ, Reyes NM
Parent perceptions of community autism spectrum disorder stigma: measure validation and associations in a multi-site sample.
In this study, the investigators 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.
AHRQ-funded; HS000063.
Citation:
Zuckerman KE, Lindly OJ, Reyes NM .
Parent perceptions of community autism spectrum disorder stigma: measure validation and associations in a multi-site sample.
J Autism Dev Disord 2018 Sep;48(9):3199-209. doi: 10.1007/s10803-018-3586-x..
Keywords:
Autism, Disabilities, Social Stigma, Socioeconomic Factors, Behavioral Health
Martinez M, Thomas KC, Williams CS
Family experiences with the diagnosis of autism spectrum Disorder: system barriers and facilitators of efficient diagnosis.
This paper examines family experiences with the efficiency of Autism Spectrum Disorder diagnosis. Screening, travel distance, and delay in diagnosis were associated with shifting diagnoses and being told child did not have ASD. Physician and parent training in communication and addressing mental health professional shortages and maldistribution may improve the diagnosis experiences of families of children with ASD.
AHRQ-funded; HS000032.
Citation:
Martinez M, Thomas KC, Williams CS .
Family experiences with the diagnosis of autism spectrum Disorder: system barriers and facilitators of efficient diagnosis.
J Autism Dev Disord 2018 Jul;48(7):2368-78. doi: 10.1007/s10803-018-3493-1..
Keywords:
Autism, Children/Adolescents, Diagnosis, Patient-Centered Healthcare, Patient Experience
Lindly OJ, Thorburn S, Heisler K
Parents' use of complementary health approaches for young children with autism spectrum disorder.
Researchers conducted a study to better understand factors influencing parents' decision to use complementary health approaches (CHA) for children with autism spectrum disorder (ASD). CHA use was negatively associated with older child age and positively associated with parents' belief ASD has major consequences and medication use. Nine themes help explain these results.
AHRQ-funded; HS000063.
Citation:
Lindly OJ, Thorburn S, Heisler K .
Parents' use of complementary health approaches for young children with autism spectrum disorder.
J Autism Dev Disord 2018 May;48(5):1803-18. doi: 10.1007/s10803-017-3432-6.
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Keywords:
Autism, Children/Adolescents, Complementary and Alternative Medicine, Decision Making, Disabilities
Bush RA, Connelly CD, Perez A
Extracting autism spectrum disorder data from the electronic health record.
This study uses electronic health record (EHR) data to examine medical utilization and track outcomes among children with Autism Spectrum Disorder (ASD). The study also identifies challenges inherent in designing inclusive algorithms for identifying individuals with ASD and demonstrates the utility of employing multiple extractions to improve the completeness and quality of EHR data when conducting research.
AHRQ-funded; HS022404.
Citation:
Bush RA, Connelly CD, Perez A .
Extracting autism spectrum disorder data from the electronic health record.
Appl Clin Inform 2017 Jul 19;8(3):731-41. doi: 10.4338/aci-2017-02-ra-0029..
Keywords:
Autism, Children/Adolescents, Data, Health Information Technology (HIT), Electronic Health Records (EHRs)
Weitlauf AS, Sathe N, McPheeters ML
Interventions targeting sensory challenges in autism spectrum disorder: a systematic review.
This review evaluated the effectiveness and safety of interventions targeting sensory challenges in ASD. It concluded that some interventions may yield modest short-term (<6 months) improvements in sensory- and ASD symptom severity-related outcomes; the evidence base is small, and the durability of the effects is unclear. Although some therapies may hold promise, substantial needs exist for continuing improvements in methodologic rigor.
AHRQ-funded; 290201500003I.
Citation:
Weitlauf AS, Sathe N, McPheeters ML .
Interventions targeting sensory challenges in autism spectrum disorder: a systematic review.
Pediatrics 2017 Jun;139(6):e20170347. doi: 10.1542/peds.2017-0347.
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Keywords:
Patient-Centered Outcomes Research, Evidence-Based Practice, Comparative Effectiveness, Children/Adolescents, Autism
Sathe N, Andrews JC, McPheeters ML
Nutritional and dietary interventions for autism spectrum disorder: a systematic review.
The objective of this study was to evaluate the effectiveness and safety of dietary interventions or nutritional supplements in autism spectrum disorder (ASD). Since the studies reviewed were small and short-term, and there were few fully categorized populations or concomitant interventions, the researchers concluded that there is little evidence to support the use of nutritional supplements or dietary therapies for children with ASD.
AHRQ-funded; 290201500003I.
Citation:
Sathe N, Andrews JC, McPheeters ML .
Nutritional and dietary interventions for autism spectrum disorder: a systematic review.
Pediatrics 2017 Jun;139(6):e20170346. doi: 10.1542/peds.2017-0346.
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Keywords:
Evidence-Based Practice, Nutrition, Vitamins and Supplements, Autism
Dawson G
Questions remain regarding the effectiveness of many commonly used autism treatments.
The author argues that there is a need for standardized, objective, quantitative, and reliable outcome measures that can be aggregated across autism clinical trials. She concludes that the authors of the systematic reviews published in this issue of Pediatrics were unable to compare or combine results across trials because of the variability in both the types of outcomes and how they were measured.
Editorial accompanying AHRQ-funded study.
Citation:
Dawson G .
Questions remain regarding the effectiveness of many commonly used autism treatments.
Pediatrics 2017 Jun;139(6):e20170730. doi: 10.1542/peds.2017-0730.
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Keywords:
Comparative Effectiveness, Patient-Centered Outcomes Research, Evidence-Based Practice, Children/Adolescents, Autism
Bush RA, Stahmer AC, Connelly CD
Exploring perceptions and use of the electronic health record by parents of children with autism spectrum disorder: a qualitative study.
This study used structured interviews with nine parents to examine perceptions of electronic health records and related patient portals in the treatment of their children. The authors recommend further research to increase portal registration and integration in patient care.
AHRQ-funded; HS022404.
Citation:
Bush RA, Stahmer AC, Connelly CD .
Exploring perceptions and use of the electronic health record by parents of children with autism spectrum disorder: a qualitative study.
Health Informatics J 2016 Sep;22(3):702-11. doi: 10.1177/1460458215581911.
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Keywords:
Autism, Electronic Health Records (EHRs), Web-Based, Patient Experience, Education: Patient and Caregiver
Bauer NS, Carroll AE, Saha C
Computer decision support changes physician practice but not knowledge regarding autism spectrum disorders.
This study examined whether adding an autism module promoting adherence to clinical guidelines to an existing computer decision support system (CDSS) changed physician knowledge and self-reported clinical practice. It found that a CDSS module to improve primary care management of ASD in pediatric practice led to significant improvements in physician-reported use of validated screening tools to screen for ASDs.
AHRQ-funded; HS018453.
Citation:
Bauer NS, Carroll AE, Saha C .
Computer decision support changes physician practice but not knowledge regarding autism spectrum disorders.
Appl Clin Inform 2015;6(3):454-65. doi: 10.4338/aci-2014-09-ra-0084.
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Keywords:
Health Information Technology (HIT), Practice Patterns, Clinical Decision Support (CDS), Children/Adolescents, Autism
Mohd Roffeei SH, Abdullah N, Basar SK
Seeking social support on Facebook for children with autism spectrum disorders (ASDs).
This study examined the types of social support messages exchanged between parents and/or caregivers of children with Autism Spectrum Disorders (ASDs) who communicate via Facebook. It found that the highest percentage of messages offered dealt with informational support (30.7 percent) followed by emotional support (27.8 percent). Network and esteem support messages were responsible for 20.97 percent and 20.2 percent, respectively.
AHRQ-funded; HS018809.
Citation:
Mohd Roffeei SH, Abdullah N, Basar SK .
Seeking social support on Facebook for children with autism spectrum disorders (ASDs).
Int J Med Inform 2015 May;84(5):375-85. doi: 10.1016/j.ijmedinf.2015.01.015..
Keywords:
Social Media, Children/Adolescents, Caregiving, Telehealth, Autism
Broder-Fingert S, Ferrone CF, Giauque A
Residents' knowledge and comfort with caring for children with autism spectrum disorder.
The authors evaluated a cohort of pediatric residents’ knowledge of and comfort with caring for children with autism spectrum disorder (ASD). Their data suggest that more education is needed to increase resident competence in caring for individuals with ASD. Residents reported very low rates of direct communication with patients with ASD and no residents had used pictures to communicate with these patients. The authors found it concerning that few residents had found resources to help these patients with their communication needs. At the same time, comfort with using pictures to communicate was scored higher than other domains.
AHRQ-funded; HS000063.
Citation:
Broder-Fingert S, Ferrone CF, Giauque A .
Residents' knowledge and comfort with caring for children with autism spectrum disorder.
Clin Pediatr 2014 Dec;53(14):1390-2. doi: 10.1177/0009922814526982.
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Keywords:
Autism, Children/Adolescents, Education: Continuing Medical Education, Children/Adolescents, Clinician-Patient Communication
