Focus Group Contributions to the Early Life Exposure Assessment Tool (ELEAT)

Background:  Accurate estimation of gestational exposure risk relies most commonly on maternal report of retrospective events, since acquisition and abstraction of more objective data from medical records is both expensive and labor-intensive.  The ELEAT (Early Life Exposure Assessment Tool) has been created through an exhaustive examination of evidence along with extensive validation and reliability testing of candidate questions and is projected for widespread use as a survey of environmental risk during early neurodevelopmental periods.

Objectives:  The aim of this study was to obtain stakeholder feedback on the ELEAT experience and suggestions for its improvement.  Discussion focused on question clarity and content and module length, formatting and mode of administration.

Methods:  We conducted two-hour focus groups with mothers of children with ASD and/or typical development from different settings after receiving informed consent. Specific guidance was sought to hone questions and modules, determine the most logical question order, simplify formatting and shorten the instrument.  The first group was composed of mothers of children with ASD who had undergone telephone administration of the ELEAT.  Healthcare workers who had self-administered the survey and who worked at and received healthcare from local community clinics comprised the second group.  The third group included women receiving reproductive care in the same clinic system who had no prior experience with the ELEAT.  Groups were led by a professional facilitator experienced in exploring health and environmental topics.  Another staff member recorded salient patterns and themes from the discussion onto visual media for the group to follow and revise during the session.

Results:  Focus group participants averaged 32 years of age and had a mean of 4 children. There were 41% White, 17% Black, 5% Asian, and 17% each were multi-racial or unreported.  Most participants were born in the U.S. (82%) and spoke English at home (88%).  Thirty-five percent had technical/vocational training, and 11% were in each of the following groups:  some high school, graduated high school, some college, completed college, and postgraduate education.  Despite group differences, similar themes emerged. Participants agreed that the survey needed more gateway questions, streamlining of questions, lower literacy level and increased cultural sensitivity.  Interestingly, they agreed that the survey should not be shortened and favored online self-administration.

Conclusions:  Linking peri-gestational experiences to subsequent neurodevelopment requires careful attention to exposure assessment.  The ELEAT has been modified in response to focus group concerns.  More extensive use of gateway questions and streamlining of content reduced redundancy and increased user-friendliness.   Lowering the literacy level should improve response accuracy in those with less education.  Enhancing cultural sensitivity of the instrument will embrace diversity and foster an atmosphere in which the varied life experiences of parents are recognized and respected.  The ELEAT provides evidence-based peri-gestational exposure assessment using questions that have been refined based on participant feedback.  The current survey minimizes participant burden and maximizes collection of accurate data and can be used by divergent investigators and populations to study risk factors for neurodevelopmental disorders such as ASD.