Quality and accessibility of written development assessment reports provided to caregivers in a publicly funded child developmental assessment service

Abstract

Despite long wait times, public paediatric developmental assessment services remain crucial for the assessment of vulnerable children, particularly those from disadvantaged backgrounds. Assessment represents a critical opportunity to guide the placement of supports to improve functioning and developmental trajectories. There is, however, a lack of research examining how multi-disciplinary assessment services conduct assessments, synthesise results and provide reports to families. This study retrospectively examined 85 reports provided to caregivers at a multi-disciplinary developmental assessment service. Reports were evaluated for whether they (1) addressed caregiver perceived needs, (2) used available data to provide appropriate information about child needs, (3) provided recommendations that were actionable and specific to needs, (4) had appropriate readability levels and (5) followed existing autism assessment guidelines. Findings showed clinicians were more focused on autism diagnostic needs while caregivers were more focused on multiple transdiagnostic needs. Recommendations provided in the reports that were related to autism diagnoses were specific and actionable, but reports rarely addressed transdiagnostic needs or comorbidities (e.g. cognitive impairments, mental health). For instance, only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Reports largely followed autism assessment guidelines, but the language used was more complex for families than what is typically recommended. Recommendations for future practice are provided to improve the quality of reports and to better meet the needs of children and families attending developmental assessment services. Lay abstract Despite long wait times, public paediatric developmental assessment services remain crucial for assessment of children. Assessment is a critical opportunity to guide the placement of supports to improve outcomes. There is little research examining how clinical assessment services conduct their assessments, present results and write reports to families. This study examined 85 reports provided to caregivers at a developmental assessment service. Reports were evaluated for whether they (1) addressed caregiver perceived needs, (2) used available data to provide appropriate information about child needs, (3) provided recommendations that were actionable and specific to needs, (4) had appropriate readability levels and (5) followed existing autism assessment guidelines. Findings showed clinicians were more focused on autism diagnostic needs while caregivers were more focused on non-diagnostic needs. Recommendations related to autism diagnoses were actionable, but they rarely addressed comorbidities such as cognitive impairments or mental health. For instance, only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Reports largely followed autism assessment guidelines, but the language used was more complex for families than recommended. Recommendations for future practice are provided so that consideration may be given to how to improve the quality and effectiveness of reports for families attending services.

French National Trends in Neurodevelopmental and Mental Health-Related Healthcare Center Visits among Youth, 2014-2022: Towards Sex Specificities in the Care Pathway

“…PERSPECTIVES AND FUTURE RESEARCH Mental health needs are commonly seen in children and adolescents with NDD, and they are often addressed partially. Practitioners focus on NDD concerns reported by the referrer 47 by lack of consultation time and limited access to structured dedicated healthcare support 48 since the care pathway of NDD and related-MH occurs among several outpatient services. 49 Identifying NDD profiles and unmet mental health concerns accounting for age and sex specificities 32…”

Access and barriers to supports for children and caregivers attending public child developmental assessment services: Findings from the Sydney child neurodevelopment research registry

“…Families can spend years waiting to receive their first multi‐disciplinary developmental assessment (Boulton et al, 2023). There is a growing need to understand how these assessments can then lead to relevant support pathways for families (Munro et al, 2023).…”