Unmet health care needs and health care quality in youth with autism spectrum disorder with and without intellectual disability

Abstract

Research indicates that youth with autism spectrum disorder often experience unmet health care needs and receive poorer quality of care. Intellectual disability commonly co-occurs with autism spectrum disorder; however, the nature of unmet health care needs and health care quality in youth with autism spectrum disorder and intellectual disability have not been investigated. As such, this study sought to examine associations among co-occurring intellectual disability, unmet physical and mental health care needs, and health care quality in youth with autism spectrum disorder. Data from this study were acquired from the 2016–2018 National Survey of Children’s Health, a nationally distributed caregiver-report questionnaire. Results found that the frequency of unmet mental health care need was significantly higher among children with autism spectrum disorder with co-occurring intellectual disability than those without intellectual disability. Using a structural equation modeling approach, it was found that the total effect of co-occurring intellectual disability on composite health care quality was significant. Investigation of indirect effects indicated that unmet mental health care need mediated the relationship between co-occurring intellectual disability and health care quality. These findings suggest that youth with autism spectrum disorder and co-occurring intellectual disability may be more likely to experience unmet mental health care needs, and that their unmet mental health care needs may negatively impact their health care quality. Lay abstract The increase in the prevalence of autism spectrum disorder has placed greater demands on the health care system. Children and adolescents with autism spectrum disorder often experience challenges accessing high-quality physical and mental health care due to characteristic social-communication deficits and behavioral difficulties, as well as high rates of complex medical and psychiatric comorbidities. Intellectual disability commonly co-occurs with autism spectrum disorder and individuals affected by this co-occurrence may have additional impairments that compound challenges accessing health care. This study investigated the relations among co-occurring intellectual disability, unmet physical and mental health care needs, and health care quality in a large, nationally distributed sample of youth with autism spectrum disorder using structural equation modeling techniques. Co-occurring intellectual disability was significantly associated with unmet mental health care needs in children with autism. In addition, unmet mental health care needs mediated the relationship between co-occurring intellectual disability and health care quality; youth with autism spectrum disorder and co-occurring intellectual disability who had a past-year unmet mental health need had significantly poorer caregiver-reported health care quality. These findings suggest that youth with autism spectrum disorder and co-occurring intellectual disability may be more likely to experience unmet mental health care needs and receive poorer quality of care than the broader autism spectrum disorder population.

Comparison of unmet health care needs in children with intellectual disability, autism spectrum disorder and both disorders combined

“…In most European countries, with universal health insurance, insurance access and coverage is likely not as significant an issue. Given the restrictions in communication of many CSHCN with their parents or health care workers, there is potential that medical ailments that the child experiences may cause behaviours interpreted as being a mental health problem rather than a medical condition that is untreated (Menezes et al 2021(Menezes et al , pp. 2204(Menezes et al -2205.…”

“…2204(Menezes et al -2205. The unmet mental health care needs in children with co-occurring ID and ASD result in a poorer quality of the overall health care received and interactions with health care workers (Menezes et al 2021(Menezes et al , pp. 2204(Menezes et al -2205.…”

“…2204(Menezes et al -2205. Of concern is the idea that existing unmet needs for a child could result in poorer quality of health care provided due to a weak provider-patient relationship (Menezes et al 2021(Menezes et al , p. 2205. Special attention to the differences in needs, unmet care and access to this care, including insurance coverage, for children with ID alone is important.…”

“…Children with both ID and ASD experience more cognitive, communication and behavioural impairments than ASD alone, which can make providing care more difficult for health care providers (Menezes et al 2021(Menezes et al , p. 2200. Paediatric providers have expressed a lack of confidence in managing certain behaviours exhibited by children with ID (Ong et al 2017, p. 299), which can be increased in children with co-occurring ID and ASD and can contribute to increased unmet health care needs compared with the general population (Menezes et al 2021(Menezes et al , p. 2200.…”

Ethics framework and recommendations to support capabilities of people with intellectual and developmental disabilities during pandemics

“…These can result in “differences in the opportunities groups have to achieve optimal health, leading to unfair and avoidable differences in health outcomes” (Weinstein, 2017). Relative to the general population, people with IDD are more likely to have unmet health needs, increased rates of avoidable hospitalization, and poorer experiences of health care (Lunsky et al, 2013; Menezes et al, 2021; Sheehan et al, 2016; Weise et al, 2021). Some premature deaths of people with IDD could have been prevented by timely and appropriate health care, according to reports from the UK (Heslop et al, 2014; Hosking et al, 2016) and Australia (Trollor et al, 2017).…”