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Whitney DG, Shapiro DN. National Prevalence of Pain Among Children and Adolescents With Autism Spectrum Disorders. JAMA Pediatr. 2019;173(12):1203–1205. doi:10.1001/jamapediatrics.2019.3826
Pain is a leading contributor to the global morbidity and disability burden.1 Pediatric pain is especially problematic, as it may impede healthful development into and throughout adulthood.2 For children with autism spectrum disorders (ASD), pain is a highly understudied area, perhaps owing to the misguided historical impression that children with ASD have lower pain sensitivity.3 However, recent evidence has contradicted this perspective4 and indicates that pain may be implicated in pathogenesis of poor health outcomes in children with ASD.5 Therefore, this study sought to provide recent national estimates of the prevalence of pain among children and adolescents with ASD.
Data came from the 2016-2017 National Survey of Children’s Health, a nationally representative, parent-proxy survey of US children.6 The overall weighted response rate was 40.7% for 2016 and 37.4% for 2017. Institutional review board approval for this study was waived because data are publicly available and deidentified.
Respondents answered the prompts, “Has a doctor or other health care provider EVER told you that this child has…” and “Has a doctor, other health care provider, or educator EVER told you that this child has…” ASD or a developmental comorbidity? If yes, respondents answered the prompt, “If yes, does this child CURRENTLY have the condition?” Autism spectrum disorder was considered if the respondent reported yes to the second prompt. A developmental comorbidity was considered if the respondent reported yes to the second prompt for cerebral palsy, epilepsy or seizure disorder, or intellectual disability. Respondents answered the prompt, “During the past 12 months, has this child had FREQUENT or CHRONIC difficulty with any of the following? Repeated or chronic physical pain, including headaches or other back or body pain.” Pain was considered if the respondent reported yes.
Weighted prevalence estimates for children (aged 6-17 years) without ASD, with ASD, and with ASD and at least 1 developmental comorbidity were calculated using SAS, version 9.4 (SAS Institute). Logistic regression models were developed with pain as the outcome and group as the primary exposure. All P values were 2-tailed, and statistical significance was set at a P value less than .05.
Data were missing on ASD, comorbidities, or pain for 1093 of 51 156 children (2.1%) and were excluded from analysis. Characteristics of children without ASD (48 591 [97.1%]), with ASD (1158 [2.3%]), and with ASD and at least 1 developmental comorbidity (314 [0.6%]) are presented in Table 1.
The prevalence (weighted estimates) of pain was 8.2% for children without ASD, 15.6% for children with ASD, and 19.9% for children with ASD and at least 1 developmental comorbidity. Compared with children without ASD, the unadjusted odds of pain were higher for children with ASD (odds ratio [OR], 2.08; 95% CI, 1.11-3.90) and ASD and at least 1 developmental comorbidity (OR, 2.80; 95% CI, 1.55-5.07). After adjusting for age, sex, race, and household poverty status, the odds of pain increased for children with ASD (OR, 2.19; 95% CI, 1.19-4.03) and ASD and at least 1 developmental comorbidity (OR, 2.96; 95% CI, 1.65-5.32) (Table 2).
The principal finding was that in a nationally representative sample from the United States, children with ASD had an elevated prevalence of pain compared with children without ASD. This disparity was more pronounced among children with ASD who had developmental comorbidities. These findings may be due to several factors, including underlying sensory sensitivities, comorbidity of conditions associated with pain (eg, cerebral palsy, genetic syndromes impacting gastrointestinal and other systems), and, by extension, a higher frequency of medical procedures that can lead to short-term or long-term pain. Study findings suggest the need for improved awareness and modalities for pain assessment as well as incorporating pain management as part of regular therapy for children with ASD. Future studies are needed to determine pain characteristics (eg, location) and if pain is implicated in short-term (eg, activity interference) or long-term (eg, noncommunicable diseases) adverse health outcomes for this population.
Corresponding Author: Daniel G. Whitney, PhD, Department of Physical Medicine and Rehabilitation, Michigan Medicine, University of Michigan, 325 E Eisenhower Pkwy, Ann Arbor, MI 48108 (email@example.com).
Accepted for Publication: April 25, 2019.
Published Online: October 28, 2019. doi:10.1001/jamapediatrics.2019.3826
Correction: This article was corrected on December 30, 2019, to fix an error in the Results section.
Author Contributions: Dr Whitney had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: Both authors.
Acquisition, analysis, or interpretation of data: Both authors.
Drafting of the manuscript: Whitney.
Critical revision of the manuscript for important intellectual content: Both authors.
Statistical analysis: Whitney.
Conflict of Interest Disclosures: Dr Whitney was supported by the University of Michigan Advanced Rehabilitation Research Training Program in Community Living and Participation from the National Institute on Disability, Independent Living, and Rehabilitation Research (grant 90AR5020-0200). No other disclosures were reported.
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