In-hospital mortality among adults with autism spectrum disorder in the United States: A retrospective analysis of US hospital discharge data

Akobirshoev, Ilhom; Mitra, Monika; Dembo, Robbie; Lauer, Emily

doi:10.1177/1362361319855795

Cited by 36 publications

(39 citation statements)

References 56 publications

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“…In terms of suggestions for improving access, autistic adults reported ( Table 3) that visiting their doctor would be easier if they could book an appointment online (68.6%, χ 2 =16.2), could book an appointment by text (37.1%, χ 2 =28.62), could book the first or last appointment of the day (40.4%, χ 2 =11.00), could wait in a quiet place or outside until it was their turn (54.5%, χ 2 =213.21) and could email their doctor in advance with a description of the issue they need to discuss (61.1%, 15), in all cases significantly more often than parents or control respondents (p<=0.001). Parents agreed that visiting a doctor would be easier if they could book an appointment online (56.2%, =47.15, p<0.001) were far more likely than control respondents (3.0%) to disagree or strongly disagree that their doctor was knowledgeable about autism.…”

Section: Resultsmentioning

confidence: 99%

Barriers to healthcare for autistic adults: Consequences & policy implications. A cross-sectional study

Doherty

Neilson

O’Sullivan

et al. 2020

Preprint

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Background: Autism is associated with reduced life expectancy, poor physical and mental health, and increased prevalence of epilepsy, obesity, hypertension, diabetes and stroke. Aim: To quantify self-reported barriers to healthcare and their consequences amongst autistic adults and compare with parents of autistic children and non-autistic controls Design and Setting: An online survey was developed from a qualitative study undertaken at Autscape, an autistic conference. Method: Thematic analysis of 75 responses was used to develop a 57-item online survey completed by 1,271 autistic adults, 406 parents of autistic children and 303 control subjects. Results: Difficulty visiting a GP was reported by 78.2% of autistic adults, 51.4% of parents and 34.9% of controls. The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (71.9%), difficulty using the telephone to book appointments (60.7%), not feeling understood (55.5%) and difficulty communicating with their doctor (53.0%). A higher rate of adverse health outcomes was reported by autistic adults; untreated physical and mental health conditions, not attending specialist referral or screening programmes, requiring more extensive treatment or surgery due to late presentations, and untreated potentially life threatening conditions. Autistic adults reported a need for online or text based appointment booking, facility to email in advance the reason for consultation, first or last clinic appointment and a quiet place to wait. Conclusion: Reduction of healthcare inequalities for autistic people requires that healthcare providers understand autistic culture and communication needs. Adjustments for autistic communication needs are as necessary as ramps are for wheelchair users.

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Section: Resultsmentioning

confidence: 99%

Barriers to healthcare for autistic adults: Consequences & policy implications. A cross-sectional study

Doherty

Neilson

O’Sullivan

et al. 2020

Preprint

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“…Autistic adults experience a greater number of co-occurring physical and mental health conditions than non-autistic adults (Croen et al, 2015;Fortuna et al, 2016), greater healthcare costs (Zerbo et al, 2019), higher rates of premature mortality (Hirvikoski et al, 2016), and higher inpatient mortality rates (Akobirshoev, Mitra, Dembo, & Lauer, 2020). Not surprisingly, studies have also found that autistic adults experience significant healthcare disparities, with higher reported rates of unmet healthcare needs, higher emergency department visits, lower use of preventive services, and lower ratings of patient-provider communication as compared to nonautistic adults (Nicolaidis et al, 2013).…”

Section: Healthcare Provider Self-efficacy Scalementioning

confidence: 99%

Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale

Nicolaidis

Schnider

Lee

et al. 2020

Autism

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Our objective was to develop a measure of healthcare providers’ self-efficacy in providing healthcare to autistic adults and to better understand their training needs. We used a community-based participatory research approach with academic researchers, autistic adults, supporters, and healthcare providers. We developed a one-page questionnaire which included the new 6-item self-efficacy scale, two items on how challenging and rewarding it is to provide care to autistic adults, and seven items on provider characteristics. We surveyed 143 healthcare providers from eight primary care clinics in Oregon and California, United States. Preliminary psychometric testing found the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Adult Autism Healthcare Provider Self-Efficacy Scale to have good internal consistency reliability (Cronbach’s alpha 0.87) and consist of a single factor. A priori hypothesis testing found correlations in the expected directions. Only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients and identify and make accommodations. Lay abstract The adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers’ confidence (or “self-efficacy”) in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers’ training needs most effectively.

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“…Enhancing the accessibility of COVID-19 testing, particularly in cases of shortage, has added potential to reduce the proportion of autistic individuals and those with ID who require any treatment, hospitalisation or intensive care. This is significant, given that autistic people and those with ID often have suboptimal experiences of accessing healthcare and hospital admission (13-16) and experience higher odds for inpatient hospital mortality (92).…”

Section: Access To Treatment Hospitalisation and Intensive Carementioning

confidence: 99%

COVID-19 health and social care access for autistic people and individuals with intellectual disability: A European policy review.

Oakley¹,

Tillmann²,

Ruigrok³

et al. 2020

Preprint

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Background: The global COVID-19 pandemic has had an unprecedented impact on European health and social care systems, with demands on testing, hospital and intensive care capacity exceeding available resources in many regions. This has led to concerns that some groups, including autistic people/ those with intellectual disability (ID), may become excluded from services. Methods: We reviewed policies from 15 European member states, published March-July 2020, pertaining to: 1) accessibility of COVID-19 testing; 2) provisions for treatment, hospitalisation and intensive care units (ICU); and 3) changes to standard health and social care. In parallel, we analysed survey data on the lived experiences of 1,301 autistic people and caregivers.Results: Autistic people/ those with ID experienced significant barriers accessing COVID-19 services. First, despite these groups being at elevated risk for severe illness due to co-morbid health conditions, there was a lack of access to COVID-19 testing. Second, many COVID-19 outpatient and inpatient treatment services were reported to be inaccessible - predominantly resulting from individual differences in communication needs. Third, ICU triage protocols (directly or indirectly) resulted in discriminatory exclusion from lifesaving treatments. Last, interruptions to standard health and social care left over 70% of autistic people without everyday support.Conclusions: The COVID-19 pandemic has further emphasised healthcare inequalities for autistic people/ those with ID, likely contributing to disproportionate increases in morbidity and mortality in these groups. Current policies and guidelines regarding the accessibility of COVID-19 services require urgent revision to prevent the widespread exclusion of autistic people and those with ID from services, which represents a violation of international human rights law.

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In-hospital mortality among adults with autism spectrum disorder in the United States: A retrospective analysis of US hospital discharge data

Cited by 36 publications

References 56 publications

Barriers to healthcare for autistic adults: Consequences & policy implications. A cross-sectional study

Barriers to healthcare for autistic adults: Consequences & policy implications. A cross-sectional study

Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale

COVID-19 health and social care access for autistic people and individuals with intellectual disability: A European policy review.

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