The objective of this cross-sectional study was to compare health-related quality of life (HRQoL) in mothers of children with autism spectrum disorders (ASD) with a norm-based sample. An additional aim was to examine the relationship between engagement in leisure and social occupations and HRQoL in mothers of children with ASD. Thirty-three mothers of children with ASD, between 27 and 49 years of age, participated. Study participants between the ages of 35 and 44 years reported poorer mental HRQoL than a national sample, but comparable physical HRQoL. Findings also revealed inverse correlations between participation in hobbies and community/education activities and physical HRQoL (e.g., participation in hobbies and community education/activities increased as physical HRQoL decreased). The mental HRQoL of caregivers of children with ASD is lower than that of the general population, suggesting the need for occupational therapists to include psychosocial screening and referral for this group in their practice. In addition, results suggest that the relation between participation and health is complex, warranting further investigation.

Objective The aim of the study is to identify and prioritize early intervention (EI) stakeholders' perspectives of supports and barriers to implementing the Young Children's Participation and Environment Measure (YC-PEM), an electronic patient-reported outcome (e-PRO) tool, for scaling its implementation across multiple local and state EI programs. Methods An explanatory sequential (quan > QUAL) mixed-methods study was conducted with EI families (n = 6), service coordinators (n = 9), and program leadership (n = 7). Semi-structured interviews and focus groups were used to share select quantitative pragmatic trial results (e.g., percentages for perceived helpfulness of implementation strategies) and elicit stakeholder perspectives to contextualize these results. Three study staff deductively coded transcripts to constructs in the Consolidated Framework for Implementation Research (CFIR). Data within CFIR constructs were inductively analyzed to generate themes that were rated by national early childhood advisors for their relevance to longer term implementation. Results All three stakeholder groups (i.e., families, service coordinators, program leadership) identified thematic supports and barriers across multiple constructs within each of four CFIR domains: (1) Six themes for “intervention characteristics,” (2) Six themes for “process,” (3) three themes for “inner setting,” and (4) four themes for “outer setting.” For example, all stakeholder groups described the value of the YC-PEM e-PRO in forging connections and eliciting meaningful information about family priorities for efficient service plan development (“intervention characteristics”). Stakeholders prioritized reaching families with diverse linguistic preferences and user navigation needs, further tailoring its interface with automated data capture and exchange processes (“process”); and fostering a positive implementation climate (“inner setting”). Service coordinators and program leadership further articulated the value of YC-PEM e-PRO results for improving EI access (“outer setting”). Conclusion Results demonstrate the YC-PEM e-PRO is an evidence-based intervention that is viable for implementation. Optimizations to its interface are needed before undertaking hybrid type-2 and 3 multisite trials to test these implementation strategies across state and local EI programs with electronic data capture capabilities and diverse levels of organizational readiness and resources for implementation.

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Date Presented 04/02/2022 Children and youth with autism spectrum disorder (ASD) use educational services for their complex needs. We analyzed the 2016/2017 National Survey of Children’s Health to examine the association between inadequate medical home primary care (MHPC) and educational service use in children with ASD. Inadequate MHPC was significantly associated with higher odds of educational service use. After adjustment, inadequate MHPC was significantly associated with lower odds of educational service use. Primary Author and Speaker: Sabrin Rizk Contributing Authors: Emmanuel Ngui, Teal Benevides, Victoria A. Moerchen, Mary Alunkal Khetani, Kris Barnekow