Parental Satisfaction Towards Autism Spectrum Disorder Diagnostic Assessment Process for Children 12-39 Months.

Abstract

Abstract BACKGROUND: To address lengthy delays in accessing diagnostic assessment for Autism Spectrum Disorder (ASD), our ASD services underwent a review of the service model in 2013-2014. In addition to establishing a formal ASD Diagnostic Clinic, the diagnostic evaluation process for children 12-39 months was re-designed. A major implemented change as part of our diagnostic process was the Pre- and Post-diagnosis parent information sessions. OBJECTIVES: To assess the satisfaction level for parents of children being evaluated through our new ASD diagnostic process for children 12-39 months. DESIGN/METHODS: This evaluation was done through two different surveys: 1) a validated, standardized telephone survey (average 15 minutes) was administered by an experienced nurse to parents whose child was diagnosed with ASD (January 2014-June 2015) based on the new ASD diagnostic process. Parents were asked to retrospectively evaluate their experience undergoing the new diagnostic assessment process; 2) a subgroup of parents completed a written survey to evaluate the Pre- and Post-diagnosis parent information sessions (of note: survey was given at the end of these educational sessions). RESULTS: 1) Telephone questionnaire: a total of 68/96 parents were surveyed (71% overall response rate; >90% mothers). Percentage of strongly agree/agree answers were obtained to these statements: a) better awareness of your child’s needs: 78%; b) receiving useful ASD information and educational materials: 90% c) overall process met needs: 77%; d) overall experience: 80%; e) parents having early intervention support since the ASD diagnostic assessment given to their child: 91%; 2) In regards to the educational sessions (Pre-diagnosis ([n=44] & Post ASD Diagnosis [n=33]), the responses to questions on the delivery, content and materials presented revealed >90% level of satisfaction. Challenges to attending theses educational sessions were less than we anticipated. CONCLUSION: The level of satisfaction to our ‘new’ ASD diagnostic process for children 12-39 months, as reported by parents, was very good. Parents felt the Pre- & Post-educational sessions were positive and valuable. This Quality Improvement initiative, redesigning the ASD diagnostic assessment process, has been validated by families.