A novel model of care for paediatric patients with developmental disabilities and associated behaviours of concern

Abstract

Aim

Children and adolescents with autism spectrum disorder and/or intellectual disability often present to emergency departments with behaviours of concern: irritability, aggression and self-injurious behaviour. The objective of this study was to design, implement and evaluate a new model of care to support these patients and their families following presentation to reduce the need for re-presentation.

Methods

We designed and evaluated a new model of care for these patients, comprising consultations with a developmental paediatrician and a child psychiatrist, referral to a specialist behavioural service and 6 weeks of care coordination by a clinical nurse consultant. Using a quality improvement framework, iterative improvements were made to the model via a series of plan–do–study–act cycles. Re-presentation rates were compared with a control group of patients who presented with behaviours of concern but were not recruited into the study. Participating families and treating clinicians were surveyed at 2 and 6 weeks post-enrolment to gather qualitative feedback about their experience of the model.

Results

A total of 31 families participated in the study. Three- and 6-month re-presentation rates were 48.7% and 36.3% lower than the control group. Qualitative evaluation of the model by both families and clinicians was positive. The model was feasible and acceptable. Families reported feeling heard and understood, and that the intervention was helpful and provided a positive path forwards.

Conclusions

The findings suggest that a simple model of care can be successfully implemented and provide meaningful benefits for families of children with behaviours of concern, including reduced crisis-oriented help-seeking.