Health Concerns and Health Service Utilization in a Population Cohort of Young Adults with Autism Spectrum Disorder

Weiss, Jonathan A.; Isaacs, Barry; Diepstra, Heidi; Wilton, Andrew S.; Brown, Hilary K.; McGarry, Caitlin; Lunsky, Yona

doi:10.1007/s10803-017-3292-0

Cited by 115 publications

(115 citation statements)

References 53 publications

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“…Third, although other studies have documented the increased odds of ED utilization for psychiatric concerns by individuals with ASD relative to those with other disabilities [Weiss et al, 2018] and PC groups [Iannuzzi et al, 2015], our findings suggest that ID status may moderate this relationship. In the present study, individuals with ASD-only tended to utilize the ED for psychiatric concerns, whereas those with ASD + ID tended to use the ED more frequently for seizure activity.…”

Section: Discussioncontrasting

confidence: 77%

“…Individuals with autism spectrum disorder (ASD) have significantly higher ED utilization than individuals without ASD across the lifespan [Deavenport-Saman, Lu, Smith, & Yin, 2016;Vohra, Madhavan, & Sambamoorthi, 2016;Weiss et al, 2018;Liu, Pearl, Kong, Leslie, & Murray, 2017; Cohen-Silver, Muskat, & Ratnapalan, 2014]. Preadolescents and adolescents with ASD may be at particularly increased risk for frequent ED utilization [Benevides, Carretta, & Graves, 2017;Schlenz, Carpenter, Bradley, Charles, & Boan, 2015] and have an increased probability of ED recidivism, relative to peers [Kalb, Stuart, & Vasa, 2018].…”

Section: Introductionmentioning

confidence: 99%

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Emergency department utilization and monetary charges in adolescents with autism spectrum disorder, intellectual disability, and a population comparison group

et al. 2019

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Adolescents with autism spectrum disorder (ASD) and/or intellectual disability (ID) may utilize the emergency department (ED) more frequently than individuals in the general population. This study compared ED utilization and charges during adolescence among four groups of individuals: ASD‐only, ASD + ID, ID‐only, and a population comparison (PC) group. ED visits occurring during age 12–17 years were examined to identify non, low, and high utilizers. Logistic regression was used to compare groups on the odds of having at least one ED visit during adolescence. Generalized linear models were used to compare groups on number of ED visits and total charges, stratified by low and high ED utilization. Descriptive examination of presenting diagnoses was performed. Individuals with ID, with or without co‐occurring ASD, were significantly more likely to have at least one ED visit during adolescence. Among high ED utilizers, the ID‐only group had the most frequent ED visits but had significantly lower charges than the ASD‐only group. Individuals with ASD‐only and ASD + ID differed from the ID‐only and PC groups in presenting diagnoses. No differences between groups in number of ED visits or charges were observed among low utilizers. ID, with or without ASD, increased the odds of visiting the ED during adolescence. Adolescents with ID‐only had the most frequent ED visits, but individuals with ASD‐only had the highest ED charges and tended to be seen for psychiatric concerns. Further research is warranted to better characterize and meet the healthcare needs of individuals with ASD and/or ID during adolescence. Autism Res 2019, 12: 1129–1138. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. Lay Summary Frequent emergency department (ED) visits strain medical resources and are costlier than primary and urgent care. Our findings show that adolescents with intellectual disability (ID) may use the ED frequently for nonurgent conditions. Adolescents with autism spectrum disorder, without ID, use the ED less frequently but incur higher charges. Further research is needed to understand how to meet the unique needs of these populations in primary care to prevent overuse of the ED.

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Section: Discussioncontrasting

confidence: 77%

Section: Introductionmentioning

confidence: 99%

Emergency department utilization and monetary charges in adolescents with autism spectrum disorder, intellectual disability, and a population comparison group

et al. 2019

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“…15,16 In healthcare settings, the communication challenges that adults with developmental disabilities often have are exacerbated because of the environment, 17 even as they are heavier users of the health care system. These adults receive more specialist care 11,18 and are more likely to visit the emergency department and be admitted to hospitals. 18,19 For instance, adults with developmental disabilities are more than twice as likely to be hospitalized for ambulatory caresensitive conditions such as diabetes-related concerns that could have been avoided if managed adequately in primary care.…”

Section: Populationmentioning

confidence: 99%

“…These adults receive more specialist care 11,18 and are more likely to visit the emergency department and be admitted to hospitals. 18,19 For instance, adults with developmental disabilities are more than twice as likely to be hospitalized for ambulatory caresensitive conditions such as diabetes-related concerns that could have been avoided if managed adequately in primary care. 20 These data suggest that the current system is not sufficiently managing clinical needs to avoid unnecessary emergency department visits.…”

Section: Populationmentioning

confidence: 99%

Designing a program evaluation for a medical‐dental service for adults with autism and intellectual disabilities using the RE‐AIM framework

Lai

Klag

Shikako‐Thomas

2019

Learning Health Systems

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Introduction Robust evaluation of service models can improve the quality and efficiency of care while articulating the models for potential replication. Even though it is an essential part of learning health systems, evaluations that benchmark and sustain models serving adults with developmental disabilities are lacking, impeding pilot programs from becoming official care pathways. Here, we describe the development of a program evaluation for a specialized medical‐dental community clinic serving adults with autism and intellectual disabilities in Montreal, Canada. Method Using a Participatory Action‐oriented approach, researchers and staff co‐designed an evaluation for a primary care service for this population. We performed an evaluability assessment to identify the processes and outcomes that were feasible to capture and elicited perspectives at both clinical and health system levels. The RE‐AIM framework was used to categorize and select tools to capture data elements that would inform practice at the clinic. Results We detail the process of conceptualizing the evaluation framework and operationalizing the domains using a mixed‐methods approach. Our experience demonstrated (1) the utility of a comprehensive framework that captures contextual factors in addition to clinical outcomes, (2) the need for validated measures that are not cumbersome for everyday practice, (3) the importance of understanding the functional needs of the organization and building a sustainable data infrastructure that addresses those needs, and (4) the need to commit to an evolving, “living” evaluation in a dynamic health system. Conclusions Evaluation employing rigorous patient‐centered and systems‐relevant metrics can help organizations effectively implement and continuously improve service models. Using an established framework and a collaborative approach provides an important blueprint for a program evaluation in a learning health system. This work provides insight into the process of integrating care for vulnerable populations with chronic conditions in health care systems and integrated knowledge generation processes between research and health systems.

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“…Across the lifespan, autistic individuals have a higher probability than people in the general population to have other health conditions (Davignon et al, 2018, Kohane et al, 2012, Muskens et al, 2017, Soke et al, 2018, Weiss et al, 2018, likely due to shared biological causes and/or the experiences of living with autism (Lai et al, 2014, Vorstman et al, 2017. Common co-occurring neurodevelopmental challenges include intellectual disability, attention-deficit/hyperactivity disorder (ADHD), tic disorders, learning disorders (Lundstrom et al, 2015) and genetic anomalies (Richards et al, 2015, Vorstman et al, 2017.…”

Section: Treating Co-occurring Health Conditionsmentioning

confidence: 99%

Evidence-based support for autistic people across the lifespan: Maximizing potential, minimizing barriers, and optimizing the person-environment fit

Lai¹,

Anagnostou²,

Wiznitzer³

et al. 2018

Preprint

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Autism is both a medical condition that can give rise to disability and an example of human neurological variation ('neurodiversity') that contributes to identity, with cognitive assets and challenges. We refer to this as the dual nature of autism. Enhancing adaptation and wellbeing is the ultimate goal for intervention/support. Evidence-based support for autistic people across the lifespan is emerging. Support should be collaborative between autistic individuals, their families, and service providers, taking a shared decision-making approach. To maximize the individual's potential, comprehensive early intervention and parent-mediated intervention, ideally taking a naturalistic approach, may help support the early development of adaptive, cognitive and language skills. Key words: autism, support, intervention, treatment, adaptation, development, lifespan, health, disability, neurodiversity OSF preprint first posted online July 19, 2018; https://dx.doi.org/10.31219/osf.io/8z5rv The copyright holders for this preprint (which was not peer-reviewed) are the authors Lai et al. (2018) Evidence-based support for autistic people across the lifespan 3The duality of autism Autism spectrum disorder/conditions (ASD or ASC (Lai and Baron-Cohen, 2015), henceforth 'autism') are atypical neurodevelopmental conditions that emerge early in life (Varcin and Jeste, 2017), with strong genetic aetiologies (Tick et al., 2016) shaped by subsequent gene-environmental interplays (Mandy and Lai, 2016). Autism has lifespan impact on an individual's development and adaptation (Howlin and Magiati, 2017). As a result of evolving diagnostic concepts, recognition of the spectrum and its multi-subgroup nature (Lai et al., 2013), along with increased awareness (Liu et al., 2010), autismformerly regarded as rare -is now considered relatively common. Globally, close to 1% of the population has a formal autism diagnosis (Baxter et al., 2015). In developed countries the prevalence is close to 1·5% (Lyall et al., 2017), with a male:female ratio of 3-4:1 (Loomes et al., 2017).Characteristics associated with autism (ie, 'autistic traits') fall along a spectrum in the general population across dimensions of social-communication, repetitive and stereotyped behaviours, and other non-clinical and cognitive features (Constantino et al., 2010, Ruzich et al., 2015, Skuse et al., 2009. Elevated autistic traits are particularly common in family members of people who have an autism diagnosis (Pickles et al., 2000, Piven et al., 1997, Wheelwright et al., 2010. Both clinical autism and the dimensional traits are associated with the additive effect of common and rare genetic variations (Geschwind and State, 2015, Robinson et al., 2016, Weiner et al., 2017, although their exact causal roles remain unclear.The dimensional nature of autistic traits makes it challenging to draw a clear diagnostic line, especially when genetic or other diagnostic biomarkers are not yet available (Constantino and Charman, 2016). From a medical perspective, a clinical diagnosi...

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Health Concerns and Health Service Utilization in a Population Cohort of Young Adults with Autism Spectrum Disorder

Cited by 115 publications

References 53 publications

Emergency department utilization and monetary charges in adolescents with autism spectrum disorder, intellectual disability, and a population comparison group

Emergency department utilization and monetary charges in adolescents with autism spectrum disorder, intellectual disability, and a population comparison group

Designing a program evaluation for a medical‐dental service for adults with autism and intellectual disabilities using the RE‐AIM framework

Evidence-based support for autistic people across the lifespan: Maximizing potential, minimizing barriers, and optimizing the person-environment fit

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