Assessing Predictors of Perceived Utility of Biological Testing Among Parents of a Child with Autism

Background: The development of biological testing for autism from identifying autism biomarkers has the potential to facilitate identification and allow for tailored and targeted treatments. In ensuring that future biological testing would address the needs of affected families, it is crucial to anticipate potential benefits and challenges posed by biological testing by assessing family’s perceived utility of biological testing. Previous research, predominantly qualitative, has suggested some parents found biological testing beneficial to improve care while others questioned its value. However, there is no consistent definition of perceived utility and no previous studies have examined its potential predictors.

Objectives: We defined perceived utility of biological testing as the potential benefits and risks for families considered by families to be possible as a result of biological testing. Our aim is to examine the extent to which a new measure of perceived utility of biological testing among parents of a child with autism is associated with level of knowledge of autism, time since diagnosis, and symptom severity.

Methods: Data were drawn from an ongoing prospective study, ASD Genome to Outcome. Children were enrolled when being referred for an autism evaluation or have a confirmed diagnosis of autism for which genetic testing is recommended or has already been performed. A systematic process was used to develop two questionnaires to assess perceived utility and knowledge with input from the target population to establish content validity. The perceived utility questionnaire consists of 23 items with a 4-point Likert scale. The knowledge questionnaire consists of 19 items with a true or false response option. Potential confounds, namely age of respondent, household income, and education, were assessed and would be controlled for statistically if they are associated with perceived utility.

Respondents (n=20) had a mean age of 40.7 years old (SD=9.15) and were mostly mothers (90%). Their child with autism (n=15 males) had a mean age of 6.7 years old (SD=3.60).

Results:  Age of respondent, household income, and education were not associated with perceived utility. Clinician-rated symptom severity was associated with perceived utility of biological testing. Parents of a child with high social communication severity reported significantly higher perceived utility (M=89.9, SD=5.02) compared to those of a child with moderate social communication severity (M=80.4, SD=4.56), t(7)= 2.84, p=0.025. Contrary to our prediction, knowledge of autism and time since diagnosis were not significantly correlated with perceived utility of biological testing (r(18) = -0.20, p = .40, r(11) = -0.26, p = .40 respectively). However, the two predictors were correlated: longer time since diagnosis was associated with higher levels of knowledge of autism, r(11) = 0.57, p= .03.

Conclusions:  Ongoing administration of the questionnaire in the target sample size of n=150 would clarify possible determinants for family engagement in biomarker discovery. The study allows for future work to address specific determinants to improve family engagement in biomarker discovery.