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.

The paediatric developmental toolkit: Facilitating learning of child development.

BACKGROUND: Recent paediatric and family medicine graduates report feeling unprepared to identify and address children and youth with developmental disorders. Developmental history taking and physical examination alone limit engagement with children and youth in an interactive manner to assess development. The paediatric developmental toolkit (PDT) was developed to provide trainees with the opportunity to interact with a child in a play-based manner. OBJECTIVES: The primary objective of this study was to determine the feasibility of PDT within clinical settings, and qualitatively explore how the PDT can be used by teachers and trainees. METHODS: Trainees and their clinical teachers participated in a qualitative study. Trainees used the PDT in clinical settings and were interviewed following their clinical encounters. Interactions between clinical teachers and trainees following the use of the PDT were also recorded. Teachers were interviewed following the trainees' case presentations and closures of clinic visits. Trainee interviews, teacher and trainee interactions, and teacher interviews were audiotaped, transcribed, and analyzed thematically. RESULTS: Nine trainees (six paediatric residents, two family medicine residents, and one clinical clerk medical student) and four developmental paediatricians participated in the study. Each trainee used the PDT twice in two different clinical encounters. All residents agreed the PDT enabled them to observe a child's developmental skills in a short period of time. Clinical teachers all felt the toolkit allowed trainees to more holistically consider a child's development and diagnosis. CONCLUSIONS: As medical education shifts to a competency-based education curriculum, the PDT is an innovative tool that can be used to enhance paediatric and family medicine residents' learning of child development by enabling opportunities for interaction with children.

A Narrative Review of Function-Focused Measures for Children With Neurodevelopmental Disorders.

Clinical measures in health and rehabilitation settings are often used to examine child functioning to better support the diverse needs of children with neurodevelopmental disorders (NDD) and their families. The WHO's International Classification of Functioning, Disability, and Health (ICF) framework reflects a focus of health beyond biomedical deficits, using the concept of functioning to create opportunities for measurement development involving this construct. In the measures developed in the field of childhood NDD, it is unclear whether and how these tools measure and incorporate the ICF framework and its domains within health care contexts. Understanding how these measures utilize the ICF will enable researchers and clinicians to operationalize function-focused concepts in studies and clinical practice more effectively. This narrative review aims to identify and describe function-focused measures that are based on the ICF for children with NDD, as described in the peer-reviewed literature. This review used a systematic search strategy with multiple health-focused databases (Medline, PsycInfo, EMBASE, EMCARE), and identified 14 clinical measures that provide direct support for children (aged 0-21) with NDD in pediatric health (and other) settings. Results described the measures that were primarily developed for three main diagnostic populations [cerebral palsy, autism spectrum disorder, and communication disorders]; had varying contextual use (clinical-only or multiple settings); and for which authors had conducted psychometric tests in the measure's initial development studies, with the most common being content validity, interrater reliability, test-retest reliability. Participation (79%, n = 11) & Activities (71%, n = 10) were the most common ICF domains captured by the set of measurement tools. Overall (71%, n = 10) of the identified measures utilized multiple ICF domains, indicating that the "dynamic nature" of the interactions of the ICF domains was generally evident, and that this result differentiated from "linking rules," commonly used in research and clinical practice. The implications of these findings suggest that clinical measures can be an effective application of the ICF's defined concepts of functioning for children with NDD.

Fostering Transformative Learning in a Social Pediatrics Research Summer Studentship.

PROBLEM: Teaching future doctors the skills necessary to address health disparities is a challenge for medical educators. In response, the authors developed and implemented the Social Pediatrics Research Summer Studentship (SPReSS) program for medical students at the University of Toronto. APPROACH: The curriculum incorporated research and clinical placements into a formal seminar series. Participating students were required to complete a research project and to write a reflection describing a situation that challenged their thinking. The authors and curriculum developers applied transformative learning principles not only to facilitate critical reflection and learning in the students but also as an innovative approach to program development and evaluation. The authors conducted a thematic analysis of the reflections of 23 students participating in the program in June and July 2013, 2014, and 2015 to evaluate the SPReSS program. OUTCOMES: The analysis revealed students' empathic responses to marginalized patients, and these responses acted as triggers for critical reflection. Students described feeling empowered to act as advocates and wrote that these feelings were reinforced through faculty members' role modeling. According to their reflections, students found the program both challenging and rewarding, particularly the integration of the clinical and research experiences which made broader sociopolitical phenomena introduced through assigned readings and seminar discussions concrete. NEXT STEPS: The authors are exploring models, including a fourth-year selective or multiyear longitudinal experience, to support more students. They also hope to involve more community partners and to evaluate long-term outcomes of participants.

Value of Collaboration With Standardized Patients and Patient Facilitators in Enhancing Reflection During the Process of Building a Simulation.

INTRODUCTION: We previously reported that experienced clinicians find the process of collectively building and participating in simulations provide (1) a unique reflective opportunity; (2) a venue to identify different perspectives through discussion and action in a group; and (3) a safe environment for learning. No studies have assessed the value of collaborating with standardized patients (SPs) and patient facilitators (PFs) in the process. In this work, we describe this collaboration in building a simulation and the key elements that facilitate reflection. METHODS: Three simulation scenarios surrounding communication were built by teams of clinicians, a PF, and SPs. Six build sessions were audio recorded, transcribed, and thematically analyzed through an iterative process to (1) describe the steps of building a simulation scenario and (2) identify the key elements involved in the collaboration. RESULTS: The five main steps to build a simulation scenario were (1) storytelling and reflection; (2) defining objectives and brainstorming ideas; (3) building a stem and creating a template; (4) refining the scenario with feedback from SPs; and (5) mock run-throughs with follow-up discussion. During these steps, the PF shared personal insights, challenging participants to reflect deeper to better understand and consider the patient's perspective. The SPs provided unique outside perspective to the group. In addition, the interaction between the SPs and the PF helped refine character roles. DISCUSSION: A collaborative approach incorporating feedback from PFs and SPs to create a simulation scenario is a valuable method to enhance reflective practice for clinicians.

Cross-cultural communication: Tools for working with families and children.

The ability to communicate effectively with patients and families is paramount for good patient care. This practice point reviews the importance of communicating effectively in cross-cultural encounters. The concept of cultural competence is introduced, along with the LEARN (Listen, Explain, Acknowledge, Recommend, Negotiate) model for cross-cultural communication. Three vignettes, one each in Indigenous, global, and newcomer child health, are used to illustrate challenges in cross-cultural communication and effective application of the LEARN model. Practical tips are provided for communicating across cultures.

Building and Participating in a Simulation: Exploring a Continuing Education Intervention Designed to Foster Reflective Practice Among Experienced Clinicians.

INTRODUCTION: Engaging health professionals in the processes of first building and then participating in simulations has not yet been explored. This qualitative study explored the experience of building and participating in a simulation as an educational intervention with experienced clinicians. METHODS: Pediatric rehabilitation clinicians, along with a patient facilitator and standardized patients, created simulations and subsequently participated in a live simulation. The educational content of the simulation was culturally sensitive communication. We collected participants' perspectives about the process from individual journal entries and focus groups. A thematic analysis of these data sources was conducted. RESULTS: Participants described a process of building and participating in a simulation that provided: 1) a unique opportunity for clinicians to reflect on their current practice; 2) a venue to identify different perspectives through discussion and action in a group; and 3) a safe environment for learning. DISCUSSION: The combined process of building and participating in a simulation stimulated reflection about the clinicians' own abilities in culturally sensitive communication through discussion, practice, and feedback. It provided a safe environment for participants to share their multiple perspectives and to develop new ways of communicating. This type of educational intervention may contribute to the continuing education of experienced clinicians in both academic and community settings.

Adaptive radiation and ecological opportunity in Sulawesi and Philippine fanged frog (Limnonectes) communities.

Because island communities are derived from mainland communities, they are often less diverse by comparison. However, reduced complexity of island communities can also present ecological opportunities. For example, amphibian diversity on Sulawesi Island is lower than it is in the Philippines, but Sulawesi supports a surprising diversity of Sulawesi fanged frogs (Limnonectes). Here we examine molecular, morphological, and geographical variation of fanged frogs from these two regions. Using genealogical concordance, morphology, and a Bayesian approach to species delimitation, we identified 13 species on Sulawesi, only four of which have been previously described. After evolutionary history is accounted for, a model with multiple body size optima in sympatric species is favored over a "random-walk" model of body size evolution. Additionally, morphological variation is higher among sympatric than nonsympatric species on Sulawesi but not in the Philippines. These findings suggest that adaptive radiation of fanged frogs on Sulawesi was driven by natural selection to infiltrate ecological niches occupied by other frog lineages in the Philippines. This supports a role of ecological opportunity in community assembly: diversification in mature communities, such as the Philippines, is limited by a dearth of unoccupied ecological niches. On Sulawesi, evolutionary novelties originated in a predictable and replicated fashion in response to opportunities presented by a depauperate ancestral community.

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.