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Improving the Patient Experience for Families of Children with Autism Spectrum Disorder through Use of an Autism-Specific Care Plan

Thursday, May 14, 2015: 11:30 AM-1:30 PM
Imperial Ballroom (Grand America Hotel)
S. broder-Fingert1, A. M. Shui2, C. Ferrone3, K. Donelan4, A. M. Neumeyer5 and K. Kuhlthau6, (1)Boston University School of Medicine, Newton, MA, (2)Biostatistics Center, Massachusetts General Hospital, Boston, MA, (3)Lurie Center for Autism, Lexington, MA, (4)Mongan Institute for Health Policy, Massachusetts General Hospital, Boston, MA, (5)Pediatrics, Lurie Center for Autism Massachusetts General Hospital, Lexington, MA, (6)Department of Pediatrics, Massachusetts General Hospital, Boston, MA
Background:  Hospital admissions can be difficult for patients with autism spectrum disorder (ASD) and their families.  Therefore, as part of a quality improvement initiative at MassGeneral Hospital for Children, we created an autism-specific care plan (ACP) to be used during hospital admissions.  The ACP is an electronic document completed by families or physicians which delineates a patient’s ASD-specific needs related to a hospital admission (e.g. mode of communication, sensory issues, safety concerns) and is loaded into the patient’s medical record. 

Objectives:  The objective of this pilot study was to compare the experience of care for children with ASD who used an ACP to children with ASD who did not an ACP.

Methods:  In April 2014, we mailed surveys to all parents of children with ASD (ICD-9 code 299.0 or 299.8) who had a hospital admission between January 2013-December 2013 (n=143).  Of these, 33 used an ACP and 109 did not.  The ACP group was self-selected and response rate was 69.6% in the ACP group and 64.2% in the non-ACP group.  Question domains included general experience with hospital care and experience related to the patient’s ASD.  We then used multivariable linear regression to assess the association of experience of care with ACP use, while adjusting for reason for hospital visit and autism severity.

Results:  The ACP group was more likely to be admitted for a medical versus psychiatric diagnosis, and had more severe autism symptoms than the non-ACP group.  Parents who used the ACP reported better experience of care relating to their general hospital experience (B coefficient 1.48, p<0.001) and staff attention to the child’s ASD specific needs (3.06, <0.001) compared to those without an ACP. 

Conclusions:  Based on this pilot study, care plans may hold promise to improve the experience of care for children with ASD and their families in the hospital setting.  Limitations include non-randomized study population and small sample size.  More rigorously designed trials are needed to determine if these findings persist.

See more of: Service Delivery/Systems of Care
See more of: Service Delivery/Systems of Care