The Pediatric Autism Research Cohort (PARC) Study: protocol for a patient-oriented prospective study examining trajectories of functioning in children with autism.

INTRODUCTION: The developmentally variable nature of autism poses challenges in providing timely services tailored to a child's needs. Despite a recent focus on longitudinal research, priority-setting initiatives with stakeholders highlighted the importance of studying a child's day-to-day functioning and social determinants of health to inform clinical care. To address this, we are conducting a pragmatic multi-site, patient-oriented longitudinal investigation: the Pediatric Autism Research Cohort (PARC) Study. In young children (<7 years of age) newly diagnosed with autism, we will: (1) examine variability in trajectories of adaptive functioning from the point of diagnosis into transition to school; and (2) identify factors associated with trajectories of adaptive functioning. METHODS AND ANALYSIS: We aim to recruit 1300 children under 7 years of age with a recent (within 12 months) diagnosis of autism from seven sites: six in Canada; one in Israel. Participants will be followed prospectively from diagnosis to age 8 years, with assessments at 6-month intervals. Parents/caregivers will complete questionnaires administered via a customized online research portal. Following each assessment timepoint, families will receive a research summary report describing their child's progress on adaptive functioning and related domains. Analysis of the longitudinal data will map trajectories and examine child, family and service characteristics associated with chronogeneity (interindividual and intraindividual heterogeneity over time) and possible trajectory turning points around sensitive periods like the transition to school. ETHICS AND DISSEMINATION: Ethics approvals have been received by all sites. All parents/respondents will provide informed consent when enrolling in the study. Using an integrated knowledge translation approach, where stakeholders are directly engaged in the research process, the PARC Study will identify factors associated with trajectories of functioning in children with autism. Resulting evidence will be shared with government policy makers to inform provincial and national programs. Findings will be disseminated at conferences and published in peer-reviewed journals.

Navigating Challenging Conversations: The Interplay Between Inquiry and Knowledge Drives Preparation for Future Learning.

Introduction: While some physicians hone their skills through informal learning in clinical practice, others do not. There is a lack of understanding of why some physicians seek improvement and how they use the workplace context to build their capabilities. Because physicians rarely pursue formal professional development activities to improve communication skills, examining physician-patient communication offers a powerful opportunity to illuminate important aspects of preparation for future learning in the workplace. Methods: This qualitative observational study involved over 100 hours of observation of eight pediatric rehabilitation physicians as they interacted with patients and families at an academic teaching hospital in 2018-2020. Detailed field notes of observations, post-observation interviews, and exit interviews were the data sources. Data collection and analysis using a constructivist grounded theory approach occurred iteratively, and themes were identified through constant comparative analysis. Results: Through their daily work, experienced physicians employ 'habits of inquiry' by constantly seeking a better understanding of how to navigate challenging conversations in practice through monitoring and attuning to situational and contextual cues, taking risks and navigating uncertainty while exploring new and varied ways of practicing, and seeking why their strategies are successful or not. Discussion: Engaging in communication challenges drives physician learning through an interplay between habits of inquiry and knowledge: inquiry into how to improve their communication supported by existing conceptual knowledge to generate new strategies. These 'habits of inquiry' prompt continual reinvestment in problem solving to refine existing knowledge and to build new skills for navigating communication challenges in practice.

A male phenotype with Aicardi syndrome.

Aicardi syndrome is a rare neurodevelopmental condition that occurs almost exclusively in women. We report a second male phenotype and 47,XXY karyotype with a typical presentation of the Aicardi syndrome including a midline arachnoid cyst.