Patient-Centered Outcomes in an Interdisciplinary Clinic for Complex Children with Autism.
Catherine G Suen, Kathleen Campbell, Gregory Stoddard and 1 others
PMID 33086336WHAT IT FOUND
Caregivers of children with autism in an interdisciplinary Medicaid-funded clinic reported significantly higher rates of shared decision-making, family-centered care, and care coordination than a national sample.
The clinic served older children with more severe autism and co-occurring conditions.
Key findings
01After controlling for child characteristics and parent education, caregivers in the HOME program were 1.25 times more likely to report shared decision-making, 1.22 times more likely to report family-centered care, and 1.41 times more likely to report effective care coordination compared to the national cohort.
02Caregivers in the HOME program were 1.62 times more likely to report that their child received care within a medical home compared to the national cohort.
03The HOME cohort had a higher proportion of children with severe autism (31.8% vs. 9.5%) and co-occurring intellectual disability (66.7% vs. 17.4%) than the national cohort.
STILL TO COME
How it was doneWhat they found
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What it does not show
The study is cross-sectional, so it cannot show how perceptions of care change over time. The HOME cohort was smaller and had more severe cases of autism and higher rates of co-occurring conditions than the national sample, which may limit generalizability to milder cases. The comparison group was a national survey, not a matched control group, so differences in care experience may be influenced by factors other than the HOME program structure. Survey response bias is possible, as caregivers who chose to participate may have been more satisfied or dissatisfied with their care. The study assumes that caregivers in the national survey did not also use the HOME program, which could bias results if there was overlap.
Declared interests
The study was supported by the National Institutes of Health and non-U.S. government research support. The authors did not report any conflicts of interest.
The easy way to misread this
Do not interpret these results as evidence that the HOME program causes better clinical outcomes for the children themselves. The study measured caregiver perceptions of care processes, such as communication and coordination, not child health or functional outcomes.