Patient and caregiver experiences at a specialized primary care center for autistic adults
Publication: Journal of Comparative Effectiveness Research
Abstract
Background: Little is known about the extent to which patient-centered medical homes meet the needs of autistic adults. Materials & methods: We conducted a cross-sectional survey of autistic adult patients (n = 47) and caregivers of autistic adult patients (n = 66) receiving care through one patient-centered medical home specifically designed to meet the needs of this population. We performed post hoc comparisons of our results to previously published data from a national sample of autistic adults. Results: Participants reported high levels of satisfaction with care, frequent preventive healthcare use and few unmet healthcare needs. Autistic adults in our sample reported significantly higher satisfaction and fewer unmet healthcare needs. Conclusion: A patient-centered medical home tailored to the needs of autistic adults is a promising approach to healthcare delivery for meeting this population’s needs.
Formats available
You can view the full content in the following formats:
References
Papers of special note have been highlighted as: •• of considerable interest
1.
Interagency Autism Coordinating Committee (IACC). 2016–2017 Interagency Autism Coordinating Committee Strategic Plan for autism spectrum disorder. USDepartment of Health and Human Services Interagency Autism Coordinating Committee, (2017). https://iacc.hhs.gov/publications/strategic-plan/2017/strategic_plan_2017.pdf
2.
Hand BN, Angell AM, Harris L, Carpenter LA. Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults. Autism 24(3), 755–764 (2020).
3.
Croen LA, Zerbo O, Qian Y et al. The health status of adults on the autism spectrum. Autism 19(7), 814–823 (2015).
4.
Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, Bölte S. Premature mortality in autism spectrum disorder. Br. J. Psychiatry 208(3), 232–238 (2016).
5.
Hand BN, Boan AD, Bradley CC, Charles JM, Carpenter LA. Emergency department utilization and monetary charges in adolescents with autism spectrum disorder, intellectual disability, and a population comparison group. Autism Res. 12(7), 1129–1138 (2019).
6.
Raymaker DM, McDonald KE, Ashkenazy E et al. Barriers to healthcare: instrument development and comparison between autistic adults and adults with and without other disabilities. Autism 21(8), 972–984 (2017).
7.
Nicolaidis C, Raymaker D, McDonald K et al. Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership. J. Gen. Intern. Med. 28(6), 761–769 (2013).
•• Contains the data on the comparison sample of autistic adults from across the US and all data collection methods for the comparison sample.
8.
Saqr Y, Braun E, Porter K, Barnette D, Hanks C. Addressing medical needs of adolescents and adults with autism spectrum disorders in a primary care setting. Autism 22(1), 51–61 (2018).
•• Describes the development of the specialized patient-centered medical home evaluated in this work.
9.
Golnik A, Scal P, Wey A, Gaillard P. Autism-specific primary care medical home intervention. J. Autism Dev. Disord. 42(6), 1087–1093 (2012).
10.
Hamilton LJ, Lerner CF, Presson AP, Klitzner TS. Effects of a medical home program for children with special health care needs on parental perceptions of care in an ethnically diverse patient population. Matern. Child Health J. 17(3), 463–469 (2013).
11.
Shahidullah JD, Azad G, Mezher KR, McClain MB, McIntyre LL. Linking the medical and educational home to support children with autism spectrum disorder: practice recommendations. Clin. Pediatr. (Phila). 57(13), 1496–1505 (2018).
12.
Agency for Healthcare Research and Quality. ‘Defining the PCMH’ (2020). https://pcmh.ahrq.gov/page/defining-pcmh
13.
Rogers K, Zeni MB. Systematic review of medical home models to promote transitions to primary adult health care for adolescents living with autism spectrum disorder. Worldviews Evid. Based Nurs. 12(2), 98–107 (2015).
14.
Hong T. Internet health information in the patient–provider dialogue. CyberPsychol. Behav. 11(5), 587–589 (2008).
15.
Smith SG, Wolf MS, von Wagner C. Socioeconomic status, statistical confidence, and patient–provider communication: an analysis of the Health Information National Trends Survey (HINTS 2007). J. Health Commun. 15(Suppl. 3), 169–185 (2010).
16.
Marks R, Ok H, Joung H, Allegrante JP. Perceptions about collaborative decisions: perceived provider effectiveness among 2003 and 2007 Health Information National Trends Survey (HINTS) respondents. J. Health Commun. 15(Suppl. 3), 135–146 (2010).
17.
Blackwell D, Gentleman J, Martin M, Ng E, Sanmartin C, Simile C. ‘Joint Canada/United States Survey of Health: findings and public-use microdata file’ (2004). www150.statcan.gc.ca/n1/en/catalogue/82M0022X
18.
Sanmartin C, Berthelot J-M, Ng E et al. Comparing health and health care use in Canada and The United States. Health Affairs 25(4), 1133–1142 (2006).
19.
CDC. ‘National Health Interview Survey (NHIS) – adult access to health care & utilization’ (2008). www.cdc.gov/nchs/nhis/data-questionnaires-documentation.htm
20.
Jackson GL, Powers BJ, Chatterjee R et al. The patient-centered medical home: a systematic review. Ann. Intern. Med. 158(3), 169 (2013).
21.
Zerbo O, Massolo ML, Qian Y, Croen LA. A study of physician knowledge and experience with autism in adults in a large integrated healthcare system. J. Autism Dev. Disord. 45(12), 4002–4014 (2015).
22.
Camm-Crosbie L, Bradley L, Shaw R, Baron-Cohen S, Cassidy S. ‘People like me don't get support’: autistic adults' experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism (2018). https://doi.org/10.1177/1362361318816053
23.
Nicolaidis C, Raymaker DM, Ashkenazy E et al. “Respect the way I need to communicate with you”: healthcare experiences of adults on the autism spectrum. Autism 19(7), 824–831 (2015).
24.
Campo JV, Geist R, Kolko DJ. Integration of pediatric behavioral health services in primary care: improving access and outcomes with collaborative care. Can. J. Psychiatry 63(7), 432–438 (2018).
25.
van Dooren K, McPherson L, Lennox N. Mapping the needs of adults with autism and co-morbid intellectual disability. Curr. Dev. Disord. Rep. 3(1), 82–89 (2016).
26.
Zerbo O, Qian Y, Ray T et al. Healthcare service utilization and cost among adults with autism spectrum disorders in a u.s. integrated healthcare system. Autism in Adulthood (2018).
27.
Manoj MP, Suja MK. Sexuality and reproductive health in young people with disability: a systematic review of issues and challenges. Sex. Disabil. 35(4), 507–516 (2017).
28.
Bernert DJ, Ogletree RJ. Women with intellectual disabilities talk about their perceptions of sex. J. Intellect. Disabil. Res. 57(3), 240–249 (2013).
29.
Greenwood NW, Wilkinson J. Sexual and reproductive health care for women with intellectual disabilities: A primary care perspective International Journal of Family Medicine 2013 (2013). www.hindawi.com/journals/ijfm/2013/642472/
30.
Gerber AH, McCormick CEB, Levine TP, Morrow EM, Anders TF, Sheinkopf SJ. Brief report: factors influencing healthcare satisfaction in adults with autism spectrum disorder. J. Autism Dev. Disord. 47(6), 1896–1903 (2017).
Information & Authors
Information
Published In
Pages: 1131 - 1140
PubMed: 32914649
Copyright
© 2020 Brittany Hand. This work is licensed under the Attribution-NonCommercial-NoDerivatives 4.0 Unported License
History
Received: 23 July 2020
Accepted: 2 September 2020
Published online: 11 September 2020
Keywords:
Topics
Authors
Metrics & Citations
Metrics
Article Usage
Article usage data only available from February 2023. Historical article usage data, showing the number of article downloads, is available upon request.
Citations
How to Cite
Patient and caregiver experiences at a specialized primary care center for autistic adults. (2020) Journal of Comparative Effectiveness Research. DOI: 10.2217/cer-2020-0155
Export citation
Select the citation format you wish to export for this article or chapter.
Citing Literature
- Abigail Dickinson, Declan Ryan, Judith E Carroll, Catherine Lord, Aging in autism: A systematic review of cognitive, neural, and physical health findings, Neuroscience & Biobehavioral Reviews, 10.1016/j.neubiorev.2026.106820, 188, (106820), (2026).
- Elizabeth O’Nions, Jude Brown, Joshua EJ Buckman, Rebecca Charlton, Claudia Cooper, Céline El Baou, Francesca Happé, Sarah Hoare, Dan Lewer, Cathie Long, Jill Manthorpe, Douglas GJ McKechnie, Marcus Richards, Rob Saunders, Will Mandy, Joshua Stott, Personality disorder diagnoses in UK Autistic people: Evidence from a matched cohort study, Autism, 10.1177/13623613251414911, (2026).
- Åsa Hedlund, Anna Andersson, Magnus Lindberg, Malin Jordal, Experiences and perceptions of physical healthcare among adult autistic patients: A scoping review, International Journal of Nursing Studies Advances, 10.1016/j.ijnsa.2025.100366, 9, (100366), (2025).
- Heather Saha, Christina Nicolaidis, Alice A. Kuo, Christopher D. Hanks, Autism, Care of Adults with Chronic Childhood Conditions, 10.1007/978-3-031-54281-7_24, (293-309), (2024).
- Samar Z Hamdan, Amanda Bennett, Autism-Friendly Healthcare: A Narrative Review of the Literature, Cureus, 10.7759/cureus.64108, (2024).
- Daniel Gilmore, Deondray Radford, Alex Coyne, Christopher Hanks, Daniel L. Coury, Amy Hess, Jennifer H. Garvin, Brittany N. Hand, A mixed-methods study of autistic adults’ healthcare independence over time, Health Care Transitions, 10.1016/j.hctj.2023.100029, 1, (100029), (2023).
- Leah I. Stein Duker, Elizabeth Goodman, Amber Pomponio Davidson, Laura Mosqueda, Caregiver perspectives on barriers and facilitators to primary care for autistic adults: A qualitative study, Frontiers in Medicine, 10.3389/fmed.2022.1022026, 9, (2022).
- Daniel Gilmore, Anne Longo, Morgan Krantz, Deondray Radford, Brittany N. Hand, Five Ways Providers Can Improve Mental Healthcare for Autistic Adults: A Review of Mental Healthcare Use, Barriers to Care, and Evidence-Based Recommendations, Current Psychiatry Reports, 10.1007/s11920-022-01362-z, 24, 10, (565-571), (2022).
- Gabriel Alain, Daniel Gilmore, Morgan Krantz, Christopher Hanks, Daniel L. Coury, Susan Moffatt-Bruce, Jennifer H. Garvin, Brittany N. Hand, Expenditures and Healthcare Utilization of Patients Receiving Care at a Specialized Primary Care Clinic Designed with and for Autistic Adults, Journal of General Internal Medicine, 10.1007/s11606-021-07180-y, 37, 10, (2413-2419), (2022).
- Brittany N. Hand, Daniel Gilmore, Lauren Harris, Amy Darragh, Christopher Hanks, Daniel Coury, Susan Moffatt-Bruce, Jennifer Garvin, “They Looked at Me as a Person, Not Just a Diagnosis”: A Qualitative Study of Patient and Parent Satisfaction with a Specialized Primary Care Clinic for Autistic Adults, Autism in Adulthood, 10.1089/aut.2020.0082, 3, 4, (347-355), (2021).