The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and Their Primary Care Providers

Overview

Journal J Gen Intern Med

Publisher Springer

Specialty General Medicine

Date 2016 Jun 9

PMID 27271730

Citations 51

Authors

Christina Nicolaidis

Dora Raymaker

Katherine McDonald

Steven Kapp

Michael Weiner

Elesia Ashkenazy

Martha Gerrity

Clarissa Kripke

Laura Platt

Amelia Baggs

Affiliations

Soon will be listed here.

Abstract

Background: The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum.

Objective: Our goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults.

Design: Toolkit development included cognitive interviewing and test-retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/post-intervention comparison.

Participants: A total of 259 autistic adults and 51 primary care providers (PCPs) residing in the United States.

Interventions: The AASPIRE Healthcare toolkit includes the Autism Healthcare Accommodations Tool (AHAT)-a tool that allows patients to create a personalized accommodations report for their PCP-and general healthcare- and autism-related information, worksheets, checklists, and resources for patients and healthcare providers.

Main Measures: Satisfaction with patient-provider communication, healthcare self-efficacy, barriers to healthcare, and satisfaction with the toolkit's usability and utility; responses to open-ended questions.

Key Results: Preliminary testing of the AHAT demonstrated strong content validity and adequate test-retest stability. Almost all patient participants (>94 %) felt that the AHAT and the toolkit were easy to use, important, and useful. In pre/post-intervention comparisons, the mean number of barriers decreased (from 4.07 to 2.82, p < 0.0001), healthcare self-efficacy increased (from 37.9 to 39.4, p = 0.02), and satisfaction with PCP communication improved (from 30.9 to 32.6, p = 0.03). Patients stated that the toolkit helped clarify their needs, enabled them to self-advocate and prepare for visits more effectively, and positively influenced provider behavior. Most of the PCPs surveyed read the AHAT (97 %), rated it as moderately or very useful (82 %), and would recommend it to other patients (87 %).

Conclusions: The CBPR process resulted in a reliable healthcare accommodation tool and a highly accessible healthcare toolkit. Patients and providers indicated that the tools positively impacted healthcare interactions. The toolkit has the potential to reduce barriers to healthcare and improve healthcare self-efficacy and patient-provider communication.

Citing Articles

Health checks for autistic adults: study protocol for a cluster randomised controlled trial.

Parr J, Taylor H, Wilson C, Scarlett C, Al-Asmori S, Buckley C Trials. 2024; 25(1):858.

PMID: 39741343 PMC: 11686900. DOI: 10.1186/s13063-024-08641-5.

Participatory longitudinal qualitative interview study to understand Autistic gynaecological and obstetric health: the Autism from menstruation to menopause study protocol.

Grant A, Williams G, Axbey H, Wilkins A, Firth E, Lim H BMJ Open. 2024; 14(12):e088343.

PMID: 39675827 PMC: 11647321. DOI: 10.1136/bmjopen-2024-088343.

Older Autistic People, Access and Experiences of Services, and the Factors That Affect This.

Hersh M, Mery P, Dawson M Int J Environ Res Public Health. 2024; 21(11).

PMID: 39595802 PMC: 11593569. DOI: 10.3390/ijerph21111535.

Repeated use of hospital-based services and delayed hospital discharges in a population-based cohort of autistic adults in Canada.

Lunsky Y, Balogh R, Chung H, Durbin A, Lai M, Tint A Autism. 2024; 29(2):536-543.

PMID: 39573824 PMC: 11816466. DOI: 10.1177/13623613241299285.

Using an Instructional Package to Support Adults with Autism in Communicating with a Medical Provider.

Wood J, Dukes C, Kearney K J Autism Dev Disord. 2024; .

PMID: 39546169 DOI: 10.1007/s10803-024-06635-5.

References

Oschwald M, Renker P, Hughes R, Arthur A, Powers L, Curry M . Development of an accessible Audio Computer-Assisted Self-Interview (A-CASI) to screen for abuse and provide safety strategies for women with disabilities. J Interpers Violence. 2008; 24(5):795-818. DOI: 10.1177/0886260508317175. View

Hong T . Internet health information in the patient-provider dialogue. Cyberpsychol Behav. 2008; 11(5):587-9. DOI: 10.1089/cpb.2007.0172. View

Ok H, Marks R, Allegrante J . Perceptions of health care provider communication activity among American cancer survivors and Adults Without Cancer Histories: an analysis of the 2003 Health Information Trends Survey (HINTS) Data. J Health Commun. 2008; 13(7):637-53. DOI: 10.1080/10810730802412172. View

Fombonne E . Epidemiology of pervasive developmental disorders. Pediatr Res. 2009; 65(6):591-8. DOI: 10.1203/PDR.0b013e31819e7203. View

Marks R, Ok H, Joung H, Allegrante J . Perceptions about collaborative decisions: perceived provider effectiveness among 2003 and 2007 Health Information National Trends Survey (HINTS) respondents. J Health Commun. 2010; 15 Suppl 3:135-46. DOI: 10.1080/10810730.2010.522701. View

Smith S, Wolf M, 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. 2010; 15 Suppl 3:169-85. DOI: 10.1080/10810730.2010.522690. View

Johnson M . The shifting landscape of health care: toward a model of health care empowerment. Am J Public Health. 2010; 101(2):265-70. PMC: 3020216. DOI: 10.2105/AJPH.2009.189829. View

Brugha T, McManus S, Bankart J, Scott F, Purdon S, Smith J . Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry. 2011; 68(5):459-65. DOI: 10.1001/archgenpsychiatry.2011.38. View

Nicolaidis C, Raymaker D, McDonald K, Dern S, Ashkenazy E, Boisclair C . Collaboration strategies in nontraditional community-based participatory research partnerships: lessons from an academic−community partnership with autistic self-advocates. Prog Community Health Partnersh. 2011; 5(2):143-50. PMC: 3319698. DOI: 10.1353/cpr.2011.0022. View

10.

Bruder M, Kerins G, Mazzarella C, Sims J, Stein N . Brief report: the medical care of adults with autism spectrum disorders: identifying the needs. J Autism Dev Disord. 2012; 42(11):2498-504. DOI: 10.1007/s10803-012-1496-x. View

11.

Kapp S, Gillespie-Lynch K, Sherman L, Hutman T . Deficit, difference, or both? Autism and neurodiversity. Dev Psychol. 2012; 49(1):59-71. DOI: 10.1037/a0028353. View

12.

Shattuck P, Roux A, Hudson L, Taylor J, Maenner M, Trani J . Services for adults with an autism spectrum disorder. Can J Psychiatry. 2012; 57(5):284-91. PMC: 3538849. DOI: 10.1177/070674371205700503. View

13.

Nicolaidis C, Raymaker D, McDonald K, Dern S, Boisclair W, Ashkenazy E . 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. 2012; 28(6):761-9. PMC: 3663938. DOI: 10.1007/s11606-012-2262-7. View

14.

Hibbard J, Greene J . What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood). 2013; 32(2):207-14. DOI: 10.1377/hlthaff.2012.1061. View

15.

Oschwald M, Leotti S, Raymaker D, Katz M, Goe R, Harviston M . Development of an audio-computer assisted self-interview to investigate violence and health in the lives of adults with developmental disabilities. Disabil Health J. 2014; 7(3):292-301. DOI: 10.1016/j.dhjo.2014.01.002. View

16.

Nicolaidis C, Kripke C, Raymaker D . Primary care for adults on the autism spectrum. Med Clin North Am. 2014; 98(5):1169-91. PMC: 4851469. DOI: 10.1016/j.mcna.2014.06.011. View

17.

Nicolaidis C, Raymaker D, Ashkenazy E, McDonald K, Dern S, Baggs A . "Respect the way I need to communicate with you": Healthcare experiences of adults on the autism spectrum. Autism. 2015; 19(7):824-31. PMC: 4841263. DOI: 10.1177/1362361315576221. View

18.

Croen L, Zerbo O, Qian Y, Massolo M, Rich S, Sidney S . The health status of adults on the autism spectrum. Autism. 2015; 19(7):814-23. DOI: 10.1177/1362361315577517. View

19.

Zerbo O, Massolo M, Qian Y, Croen L . A Study of Physician Knowledge and Experience with Autism in Adults in a Large Integrated Healthcare System. J Autism Dev Disord. 2015; 45(12):4002-14. DOI: 10.1007/s10803-015-2579-2. View

20.

Fortuna R, Robinson L, Smith T, Meccarello J, Bullen B, Nobis K . Health Conditions and Functional Status in Adults with Autism: A Cross-Sectional Evaluation. J Gen Intern Med. 2015; 31(1):77-84. PMC: 4700008. DOI: 10.1007/s11606-015-3509-x. View