Heterogeneity in Autism Spectrum Disorder Case-Finding Algorithms in United States Health Administrative Database Analyses.
Scott D Grosse, Phyllis Nichols, Kwame Nyarko and 3 others
PMID 34581918WHAT IT FOUND
US health database studies use wildly inconsistent rules to identify autistic patients.
Some require just one diagnosis code, others demand multiple claims over years. This makes comparing autism prevalence, healthcare use, and costs across studies unreliable and risky.
Key findings
01Case-finding algorithms for autism in US health administrative data vary significantly in the diagnosis codes used and the number of claims required.
02Nearly half of the reviewed studies used all autism diagnosis codes, while the rest excluded specific subtypes or required multiple claims on separate dates.
03This lack of standardization challenges the synthesis of evidence from epidemiologic and health services research studies.
STILL TO COME
How it was doneWhat they found
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
This is a scoping review, which means it maps the literature but does not assess the quality of the individual studies included. The review only looked at US studies using ICD-9-CM codes up to February 2020, so it may not reflect current ICD-10 practices or international data. The authors excluded studies that used any data source other than pure administrative claims, such as those combining claims with school records or medical charts, which might have provided a more complete picture of how autism is tracked in mixed-method settings.
Declared interests
The authors declared no conflicts of interest.
The easy way to misread this
Do not assume that prevalence or cost figures from different autism studies are directly comparable. One study might count a child with autism after a single doctor visit, while another requires multiple visits over several years, leading to vastly different estimates of who is included and how much care they use.