Cited by 419Autism Spectrum Disorder ResearchPatient-Provider Communication in HealthcareDown syndrome and intellectual disability research

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Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership

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Nicolaidis, Christina, Raymaker, Dora, McDonald, Katherine, Dern, Sebastian, Boisclair, W. Cody, Ashkenazy, Elesia, Baggs, Amanda·2013·Journal of General Internal Medicine

DOI 10.1007/s11606-012-2262-7PMC PMC3663938

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Abstract

Background Little is known about the healthcare experiences of adults on the autism spectrum. Moreover, autistic adults have rarely been included as partners in autism research.Objective To compare the healthcare experiences of autistic and non-autistic adults via an online survey.Methods We used a community-based participatory research (CBPR) approach to adapt survey instruments to be accessible to autistic adults and to conduct an online cross-sectional survey. We assessed preliminary psychometric data on the adapted scales. We used multivariate analyses to compare healthcare experiences of autistic and non-autistic participants.Results Four hundred and thirty-seven participants completed the survey (209 autistic, 228 non-autistic). All adapted scales had good to excellent internal consistency reliability (alpha 0.82-0.92) and strong construct validity. In multivariate analyses, after adjustment for demographic characteristics, health insurance, and overall health status, autistic adults reported lower satisfaction with patient-provider communication (beta coefficient -1.9, CI -2.9 to -0.9), general healthcare self-efficacy (beta coefficient -11.9, CI -14.0 to -8.6), and chronic condition self-efficacy (beta coefficient -4.5, CI -7.5 to -1.6); higher odds of unmet healthcare needs related to physical health (OR 1.9 CI 1.1-3.4), mental health (OR 2.2, CI 1.3-3.7), and prescription medications (OR 2.8, CI 2.2-7.5); lower self-reported rates of tetanus vaccination (OR 0.5, CI 0.3-0.9) and Papanicolaou smears (OR 0.5, CI 0.2-0.9); and greater odds of using the emergency department (OR 2.1, CI 1.8-3.8).Conclusion A CBPR approach may facilitate the inclusion of people with disabilities in research by increasing researchers' ability to create accessible data collection instruments. Autistic adults who use the Internet report experiencing significant healthcare disparities. Efforts are needed to improve the healthcare of autistic individuals, including individuals who may be potentially perceived as having fewer disability-related needs.

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Additional file 2 of Development and preliminary evaluation of a novel physician-report tool for assessing barriers to providing care to autistic patients
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Additional file 3 of Exploring the impact of mental health conditions on vaccine uptake in high-income countries: a systematic review
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Additional file 1 of Development and preliminary evaluation of a novel physician-report tool for assessing barriers to providing care to autistic patients
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Additional file 3 of Development and preliminary evaluation of a novel physician-report tool for assessing barriers to providing care to autistic patients
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Additional file 1 of Autistic adults have poorer quality healthcare and worse health based on self-report data
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Additional file 4 of Development and preliminary evaluation of a novel physician-report tool for assessing barriers to providing care to autistic patients
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Additional file 2 of Exploring the impact of mental health conditions on vaccine uptake in high-income countries: a systematic review
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Additional file 1 of Psychoeducational group intervention for intellectually able adults with autism and their close relations (Prisma) – an open feasibility study
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Additional file 1 of An investigation of the diet, exercise, sleep, BMI, and health outcomes of autistic adults
Weir, E. M., Allison, C. L., Ong, K. K., & Baron‐Cohen, S. (2021) · Figshare · doi:10.6084/m9.figshare.14561472
Additional file 1 of Barriers and needs in mental healthcare of adults with autism spectrum disorder in Germany: a qualitative study in autistic adults, relatives, and healthcare providers
Dückert, S., Gewohn, P., König, H., Schöttle, D., Konnopka, A., Rahlff, P., Erik, F., Vogeley, K. T., Schulz, H., David, N., et al. (2023) · Figshare · doi:10.6084/m9.figshare.23731006
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Peth, J., David, N., Dückert, S., Gewohn, P., Schöttle, D., Rahlff, P., Konnopka, A., König, H., Vogeley, K. T., Nicolaidis, C., et al. (2026) · Autism in Adulthood · doi:10.1177/25739581261441229
Self-citation

Authors: Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Boisclair, W. C., Ashkenazy, E., & Baggs, A.
Affiliations: Oregon Health & Science University (US)
Syracuse University (US)
Corresponding author: Nicolaidis, Christina
Raymaker, Dora
ORCID: Nicolaidis, Christina
Raymaker, Dora
McDonald, Katherine
Venue: Journal of General Internal Medicine
Publisher: Springer Science and Business Media LLC
Published: 2012-11-21
Volume: 28
Issue: 6
Pages: 761-769
ISSN: 0884-8734 (ISSN-L)
1525-1497
DOI: 10.1007/s11606-012-2262-7
PMC: PMC3663938
OpenAlex: W1999004010
Cited by: 419
References: 65
Citations by year: 2026: 32 · 2025: 35 · 2024: 47 · 2023: 47 · 2022: 40 · 2021: 58 · 2020: 36 · 2019: 29 · 2018: 22 · 2017: 17 · 2016: 22 · 2015: 11 · 2014: 14 · 2013: 7
FWCI: 5.24
Type: journal article
Language: en
Open access: bronze
doi.org
Licence: www.springer.com/tdm (tdm)
Locations: Journal of General Internal Medicine (publishedVersion)
Europe PMC (PubMed Central) (publishedVersion)
PubMed Central (publishedVersion)
PubMed (publishedVersion)
PDXScholar (Portland State University) (submittedVersion)
Funders: National Institutes of Health (UL1TR000128, RR024140)
Oregon Clinical and Translational Research Institute (UL1RR024140, RR024140)
National Center for Research Resources (UL1RR024140)
National Center for Advancing Translational Sciences
Topics: Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
Keywords: autistic adults, patient experience, patient-provider communication, unmet health needs, mental health services, physical health care, vaccination, emergency department utilization, health care disparities, community-based participatory research
MeSH terms: Academic Medical Centers, Adult, Attitude to Health, Autistic Disorder, Cross-Sectional Studies, Female, Humans, Male, Middle Aged, Online Systems, Professional-Patient Relations, Psychometrics, Socioeconomic Factors, United States, Patient Satisfaction, Health Care Surveys, Self Efficacy, Needs Assessment, Healthcare Disparities, Community-Based Participatory Research, Young Adult

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Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership

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