Parent-Reported Shared Decision Making: Autism Spectrum Disorder and Other Neurodevelopmental Disorders

Area of Science:

• Pediatric Health
• Neurodevelopmental Disorders
• Health Services Research

Background:

• Shared decision making (SDM) is crucial for children with special healthcare needs.
• Understanding factors influencing SDM in neurodevelopmental disorders is essential for improving care.
• Previous research has not fully elucidated differences in SDM across diagnostic groups like autism spectrum disorder (ASD), cerebral palsy (CP), and Down syndrome (DS).

Purpose of the Study:

• To compare parent-reported SDM across diagnostic groups: ASD, CP, and DS.
• To examine the influence of having a medical home and the level of child functional impairment on SDM.
• To identify factors associated with variations in SDM for children with neurodevelopmental disorders.

Main Methods:

• Secondary analysis of the 2009-2010 National Survey of Children with Special Health Care Needs.
• Inclusion of 3966 children diagnosed with ASD, CP, or DS.
• Statistical modeling (regression analyses) to assess SDM (categorical and continuous measures) adjusted for child/family characteristics, medical home, functional impairment, and diagnostic group.

Main Results:

• Children with ASD reported significantly lower SDM compared to those with CP or DS.
• Having a medical home was strongly associated with higher SDM (adjusted odds ratio 6.6).
• Greater functional impairment was associated with lower SDM (adjusted odds ratio 0.4), particularly in the ASD group.

Conclusions:

• A medical home positively impacts SDM for children with neurodevelopmental disorders.
• Children with autism spectrum disorder and those with significant functional impairment experience less SDM.
• Tailored strategies may be needed to enhance SDM for specific diagnostic groups and functional levels.