Factors Associated with Parent Satisfaction with Emergency Department Visits When the Patient Has Autism

Background: Providing optimum care in an emergency department or urgent care center (ED) to autistic (ASD) patients, who often have limited communication, hypersensitivity, ritualistic behavior, and need for routine, can be challenging for both families and ED staff. Published and anecdotal reports reveal that parents of autistic children are often frustrated with ED care, but associated or potentially causative factors have not been systematically studied. By tapping the unique perspective and insight of parents of children with ASD, effective opportunities for improvement can be identified.

Objectives: To identify factors influencing parent satisfaction with ED visits in order to inform both parents and ED staff on how better to prepare for effective care of their ASD children.

Methods: With the assistance of the Interactive Autism Network (IAN) Research Database at Kennedy Krieger Institute, Baltimore, an invitation was sent to 10,000 parents of ASD children to complete an anonymous internet survey if their child received care at an ED in the U.S. within the last 3 years and was 3-21 years old at the time. Using a 5-level Likert scale the respondents were asked whether they were “satisfied with the experience and the care provided.” The survey also included questions about parent education and occupation, patient characteristics, parent expectations and preparation for the visit, and the ED experience itself, including ED staff characteristics and behaviors.

Results: Of 404 completed surveys, 379 (93.8%) were analyzed (excluding 25 reported patients without ASD). Of these, 223 (58.8%) respondents expressed satisfaction and 156 (41.2 %) dissatisfaction or neutrality with their ED experience.  In bivariate analyses satisfaction was considerably less common when the patient was disruptive (50.7%) versus not disruptive (82.5%) during the visit (Χ²=30.1; df=1; p<0.001). Satisfaction with the visit was also associated with waiting and treatment room wait times (both p<0.001) that were shorter than expected but not with actual waiting room time. Parent positive assessments of the ED staff on a variety of communication and professionalism skills parameters (e.g. talked with patient at appropriate developmental level) were also associated with satisfaction (all p<0.001). There was a trend toward satisfaction if the parent notified the staff at arrival of their child’s disability (p=.072). Satisfaction was not associated with either of two proxies of severity of the patient’s disability (restrictiveness of educational environment; communication competence), whether the patient has increased sensitivity to sensory stimuli, or parent education. Interestingly satisfaction was not more likely if the parent brought the patient’s medical records to the visit. Further analysis using multiple logistic regression will assess the independent effects of these correlates on ED experience satisfaction. In addition the factors that correlate with disruptive behavior during an ED visit will be separately analyzed.

Conclusions: The patient’s manifestation of disruptive behavior is a potent predictor of whether an ED visit is perceived by the parent as a positive experience or not. Otherwise, it appears that perception of a positive ED experience depends more on ED preparedness and staff training than on patient characteristics, including extent of disability.