Advancing Family-Centred Health Care for Autism and Related Conditions through Integrated Research

Background: Relative to the large body of research available in autism, translation of evidence into sustainable improvements to care delivery is limited. Among the barriers to translation is that research in autism has traditionally been done in parallel or subsequent to care delivery. Moreover, families who participate in research are not always a representative group of health-services users, thus limiting generalizability of findings into clinical practice. The use of a learning healthcare system approach (e.g., Friedman et al., 2010) is one strategy to accelerate research and its translation of the best available knowledge into population health benefits.

Objectives: We conducted a clinical quality improvement study to identify strategies and tools that can enhance integration of research into routine care in tertiary diagnostic centres in the province of Quebec, Canada. Specifically, we used a qualitative approach to examine facilitators and barriers to capturing clinically valid and standardized phenotypic information derived from diagnostic assessments of children referred for ASD assessments.

Methods: We developed a focus group guide, based on a review and comparison of recommended gold standard local and international practices for routine autism diagnostic assessments (American Academy of Pediatrics, UK National Institute for Health and Care Excellence, and Quebec’s College of Physicians/Order of Psychologists). Professionals in five multidisciplinary specialist diagnostic teams were invited to participate in a 90-minute focus group (n=30). Each focus group included 5-7 professionals (e.g., clinical coordinator, psychologist, psychiatrist, developmental pediatrician, speech and/or occupational therapist) from the same care team. Focus group questions prompted information about the team’s structure, the routine diagnostic assessment, feedback to families, follow-up with families, and data management.

Results: Overall, we found high consistency between gold standard recommendations and diagnostic team reports of their team’s practices. The use of standardized tools was consistently used to assess phenotypic information (e.g., core autism features and developmental skills). In contrast, there was a lack of consistency in measuring psychosocial domains, such as parental knowledge of ASD and parental coping skills. The main barriers to use of standardized tools, reported by clinicians, were limited time and/or resources and linguistic and cultural diversity in the target population. Overall, there was limited systematic capture of clinical data from the diagnostic process into a database. However, two of the care teams had research registries, where a proportion of families seen in their services are enrolled.

Conclusions: We found consistency across diagnostic teams in the constructs guiding assessment of ASD, despite variation in the degree of standardization. Clinical teams do not routinely capture phenotypic data in a systematic way, making it difficult to integrate or utilize clinical phenotypic information into research. Further analysis and follow up activities are now underway to develop strategies and tools to support harmonization of processes and clinical data capture during routine services. This approach is critical as autism research moves to ‘Big Data’, where the inclusion of representative populations will ultimately help accelerate the integration of research findings into clinical practice. This study demonstrates that further exploration of this area could lead to long-term health system improvement.