Assessing Parents' Perspectives on Autism Biomarker Discovery

Background:  Research on understanding biomarkers for autism spectrum disorders (ASD) provides the potential to identify and monitor children at risk for ASD earlier than currently possible, thus facilitating access to personalized care. However, the complexity of the role of biomarkers in ASD coupled with the heterogeneity of ASD warrants a cautious translation of research findings in this field.

Based on previous models of community engagement in autism research (Walsh et al., 2011; Elsabbagh et al., 2014), systematically understanding the priorities and needs of the intended beneficiaries of research would inform this area of research. Our previous scoping review revealed limited examples of an empirical assessment of priorities and needs of beneficiaries (Yusuf and Elsabbagh, under review): thus far, few studies have examined parents’ attitudes towards autism research in general and biomarker discovery in particular. Some current knowledge gaps include 1) the extent to which priorities of research on ASD biomarkers are valued by beneficiaries; 2) the potential utility of biomarkers to inform care; and 3) the perceived balance of risk and benefits from putative biomarkers for ASD.

Objectives: Despite emerging findings (Narcisa et al., 2012; Trottier et al., 2013; Wydeven et al., 2012) we could not identify validated tools to assess parent perspectives on biomarker discovery. Therefore, the goal of the study is to develop a questionnaire for use with parents of children with ASD on their needs and priorities for biomarker discovery.

Methods:  Questionnaire items were adopted from results of a scoping review, focusing on three constructs: 1) general priorities for research on ASD biomarkers; 2) current and potential utility of biomarkers to inform care; and 3) perceived social impact of biomarker discovery.

The items were reviewed by a parent of a child with autism and by experts in the field of autism biomarkers. The updated version was then pre-testedthrough a series of cognitive interviews of parents of a child with ASD (n=8) to ensure that the items could be understood, in the same way across participants, and as intended (Collins, 2004).

The on-line questionnaire was pilot tested among parents of children with ASD (n=10). All participants have a male child with ASD with an average age of 15 years old (SD=3.5).

Results:  Pilot data suggest that parents consider the following priorities for biomarker discovery as very important: understanding how the brain develops in ASD and the developmental pathways in ASD. Potential uses of biomarkers rated as very importantinclude using biomarkers to help develop behavioural interventions and to treat ASD-related medical issues. Half of the participants considered using biomarkers to identify ASD during pregnancy as of little importance. All participants agreed that further understanding of biomarkers for ASD would help others perceive their child more positively, but half did not think that it would change their experience as a parent.

Conclusions:  Preliminary results suggest that it is feasible to empirically assess parents’ perspectives on autism biomarker discovery. Future administration of the questionnaire in the target population would inform the translation of biomarker discovery to address families’ needs.