Factors Influencing Healthcare Satisfaction in Adults with Autism Spectrum Disorder

Background: Adults with autism spectrum disorder (ASD) have medical needs that require higher healthcare service utilization than typically developing adults (Croen et al., 2015). Prior research also has indicated that adults with ASD are less satisfied with their healthcare than typically developing adults. (Nicolaidis et al., 2013).

Objectives: The current study examined healthcare satisfaction and factors contributing to satisfaction in adults with ASD.

Methods: The sample consisted of 92 adults with ASD, ranging in age from 18 to 64 years (M=31.1 years, SD=12.6). Participants were divided into young adults (< 26 years of age; 46%), and adults (≥ 26 years of age). This cut point was selected because in the US a number of significant health care transitions take place by age 26. 76 participants completed an Autism Diagnostic Observation Schedule, second edition (ADOS-2). All participants, recruited from community service agencies and clinicians, entered the study with a diagnosis of ASD and/or met criteria for ASD on the ADOS-2. 62 participants had a parent or guardian available to complete a Vineland-II questionnaire. Participants or their caregiver completed a survey about their experiences with their primary care physician, dentist, vision care practitioner, and mental health clinician. Each practitioner was rated on a 1-5 scale (1=extremely dissatisfied, 5=extremely satisfied). A total healthcare satisfaction score was computed by averaging the four satisfaction subscales. All participants completed this questionnaire.

Results: In contrast to previous reports, study participants were highly satisfied with their healthcare (M=4.39, SD=0.88). The mean adaptive skills score of study participants (M=52.3, SD=19.7) was two standard deviations below average, indicating significant impairment. The majority of participants in the study were living in their family home (68%). 97% of the sample had public and/or private health insurance. While 60% were their own guardians, only 30% completed the satisfaction questionnaire on their own, and only 29% were involved in their own healthcare decisions. A series of correlation analyses revealed age to be the only significant predictor of satisfaction, r(90) = .24, p < .05. Specifically, participants below 26 (M = 4.62) were more satisfied with their healthcare than participants 26 and older (M = 4.19). Further analysis demonstrated that participants under 26 were significantly more likely to live at home, χ² (1) = 31.24, p < .001, have private health insurance, χ² (1) = 18.03, p < .001, have someone else complete the questionnaire, χ² (1) = 11.34, p < .01, and have others make their healthcare decisions, χ² (1) = 10.62, p < .01, than participants 26 and above. Additionally, participants below 26 (M = 67.76, SE = 3.64) had significantly greater communication skills than participants 26 and older (M = 47.21, SE = 4.78), t(57.72) = 2.59, p < .05.

Conclusions: Healthcare satisfaction, in a significantly impaired adult ASD population, can be high in a community that emphasizes family care, adequate health insurance and supportive services. Future studies need to define the context as well as correlated factors associated with satisfaction.