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A novel model of care for paediatric patients with developmental disabilities and associated behaviours of concern
Daryl Efron1,2,3, James Fowler1,4, Emily Cull1
1Health Services, Murdoch Children's Research Institute, Melbourne, Victoria, Australia.
Insights
A new care model for children with autism spectrum disorder and/or intellectual disability significantly reduced emergency department re-presentations. This approach provided valuable support for families, improving their experience and reducing crisis-oriented help-seeking.
Area of Science:
- Child and Adolescent Psychiatry
- Developmental Pediatrics
- Behavioral Health Services
Background:
- Children and adolescents with autism spectrum disorder (ASD) and/or intellectual disability (ID) frequently present to emergency departments due to behaviors of concern, including irritability, aggression, and self-injurious behavior.
- These presentations often indicate unmet needs and can lead to repeated emergency department visits, straining healthcare resources and family well-being.
Purpose of the Study:
- To design, implement, and evaluate a novel model of care aimed at supporting children and adolescents with ASD and/or ID and their families after emergency department presentation.
- The primary goal was to reduce the rate of re-presentation to emergency departments for behaviors of concern.
Main Methods:
- A new care model was developed, incorporating consultations with developmental pediatricians and child psychiatrists, referral to specialist behavioral services, and 6 weeks of care coordination by a clinical nurse consultant.
- A quality improvement framework, utilizing plan-do-study-act cycles, guided iterative improvements to the model.
- Re-presentation rates were compared against a control group. Qualitative feedback was collected from participating families and clinicians via surveys at 2 and 6 weeks post-enrolment.
Main Results:
- Thirty-one families participated in the study.
- The model demonstrated a significant reduction in re-presentation rates: 48.7% lower at 3 months and 36.3% lower at 6 months compared to the control group.
- Qualitative feedback from families and clinicians was positive, indicating the model was feasible, acceptable, and helpful, with families feeling heard and supported.
Conclusions:
- A straightforward care model can be effectively implemented to support children and adolescents with behaviors of concern.
- This model offers meaningful benefits for families, including a reduction in crisis-oriented help-seeking and improved overall support.
- The findings support the integration of such specialized care coordination into routine practice for this vulnerable population.
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.
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