Parents of children with autism report greater difficulty accessing health care

1. The prevalence of autism spectrum disorder (ASD) through the National Survey of Children’s Health (NSCH) was estimated to be 2.5% in children 3-17 years of age. Parents of children with ASD were more likely to have higher health care needs and difficulties in accessing health care.

2. Medication was more likely to be used for ASD symptoms in children with ASD and comorbid emotional, behavioral, and developmental conditions (EBDs).

Evidence Rating Level: 4 (Below Average)

Study Rundown: Increased parental and medical provider identification of ASD, among other factors, have contributed to the increase in ASD prevalence over the past 4 decades. Existing studies have shown that children with ASD have greater health service needs and generate higher costs in both medical and non-medical care. In this cross-sectional study, parent-reported data from the 2016 NSCH was used to estimate the prevalence of parent-reported ASD and associated patterns in health care access and utilization. The weighted prevalence of parent-reported ASD for children 3-17 years of age was 2.5%. Parents of children with ASD reported higher demands for health care (i.e. were more likely to have seen a medical provider in the past year and have a personal doctor or nurse), but greater difficulty accessing needed health care services (i.e. were more likely to not be receiving the needed coordination of care). The weighted prevalence of medical and behavioral treatment for ASD was 27.4% and 64.2%, respectively. Children with ASD and comorbid EBDs were more likely to receive medical therapy for ASD symptoms. Limitations of this study include reliance on parent survey responses without clinical validation of ASD diagnosis and intrinsic changes to the 2016 NSCH survey from mail/internet responses compared to prior telephone surveys. For providers, these data suggest a need for improvement in care coordination and delivery of medical services to families with children diagnosed with ASD.

Click to read the study, published today in Pediatrics

Click to read the accompanying commentary in Pediatrics

Relevant Reading: National autism prevalence trends from the United States special education data

In-Depth [cross-sectional study]: The 2016 NSCH included 43 283 responses from parents with children 3-17 years of age and the overall weighted response rate was 40.7%. The authors identified pediatric ASD cases based on survey results if parents reported an ASD diagnosis in their child given by a health care provider, and also reported that the child currently had ASD. The weighted prevalence of ASD was 2.5% (n = 1529). The prevalence of ASD was significantly higher in boys (aPRR = 3.46, 95%CI 2.55-4.69), children of single mothers (aPRR = 1.47, 95%CI 1.05-2.05), US-born children (aPRR = 2.34, 95% 1.30-4.21), and children who were born preterm (aPRR = 1.71, 95%CI 1.26-2.31). Children with ASD had higher health care demands, as they were more likely to have visited a medical provider in the past year (aPRR = 1.12, 95%CI 1.09-1.15), received treatment from a mental health provider (aPRR = 15.19, 95%CI 12.76-18.05), used medication for emotions or behavior (aPRR = 84.56, 95%CI 59.19-120.81), and have at least 1 personal doctor or nurse (aPRR = 1.10, 95%CI 1.02-1.18) when compared to children without ASD. They were also less likely to have no problems getting referrals (aPRR = 0.81, 95%CI 0.71-0.93) and to receive all needed components of care coordination (aPRR = 0.59, 95%CI 0.51-0.68). The weighted prevalence of medical and behavioral treatment for ASD was 27.4% and 64.2%, respectively. Children with ASD with concurrent ADD and/or ADHD were more likely to receive medication for ASD symptoms (aPRR = 3.30, 95%CI 2.14-5.07). Parents with children with ASD were also more likely to report not getting the mental health care needed (aPRR = 6.82, 05%CI 3.45-13.51) and to be usually or always frustrated in efforts to get services (aPRR = 10.53, 95%CI 7.51-14.77).

Image: PD

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