Table 2.
Summary of US studies indexed in PubMed using the presence of ICD-9-CM diagnosis codes for autism spectrum disorder to identify presumed cases, January 2006–February 2020
| Study | ICD-9/10-CM codes used to include or exclude ASD cases (exclusion criteria in parentheses) | Type of algorithma | Years of data used for case ascertainment | Continuous enrollment requirement (months) | Age range (years) | Type of health plans or data source |
|---|---|---|---|---|---|---|
| Barry et al. (2017) | 299.xx | B1 | 2008–2012, all years used | None | 0 to 21 | Private |
| Barry et al. (2019) | 299.xx | C1 | 2008–2012, all years used | None | 0 to 21 | Private |
| Bishop-Fitzpatrick and Rubenstein (2019) | 299.0x, 299.8x, and 299.9x | B1 | 2012–2015, all years used | None | 40 and older | Fee-for-service Medicaid |
| Burke et al. (2014) | 299.0x, 299.8x, and 299.9x (excluded cases with 299.1x or 300.8) | B1 | 2001–2009, all years used | 12 (6 months before and after claim | 2 to 20 | Private |
| Candon et al. (2018) | 299.xx | B1 | 2008–2012, all years used | None | 0 to 21 | Private |
| Candon et al. (2019) | 299.xx | B1 | 2008–2012, all years used | None | < 20 | Private |
| Chi et al. (2016) | 299.xx | A1 | 2003–2011, all years used | 11–12 | 3 to 17 | Medicaid |
| Cidav et al. (2013) | 299.xx | C2 | 2005 | 12 | 3 to 20 | Fee-for-service Medicaid |
| Cidav et al. (2014) | 299.xx | C2 | 2005 | 0 to 20 | Fee-for-service Medicaid | |
| Cidav et al. (2018) | 299.00, 299.8, 299.9 | C1 | 2001–2007, all years used | 6 months | 2 to 17 | Medicaid |
| Cohrs and Leslie (2017) | 299.0x, 299.8x, and 299.9x | B1 | 2011 | None | 1 to 17 | Private |
| Coleman et al. (2015) | 299.0x, 299.8x, and 299.9x | B1 | 1995–2010, all years used | None | Under 18 in 2010 | Mental Health Research Network |
| Croen et al. (2006) | 299.0x and 299.8x | A1 | 2003–2004, 12 months | 12 | 2 to 18 | HMO |
| Cummings et al. (2016) | 299.0x, 299.8x, and 299.9x | B1 | 2009–2010, all years used | 10 | 3 to 17 | Mental Health Research Network |
| Daniels and Mandell (2013) | 299.0x or 299 | C2 | 2001–2005, all years used | 10 months each year from birth to ASD diagnosis | Born in 2001 | Medicaid |
| Flanders et al. (2006) | 299.0x, 299.1x, 299.9x and 330.8 | A1 | January 2001–June 2003, all years used | 90 days before & 180 days after diagnosis | 3 to 17 | Private |
| Flanders et al. (2007) | 299.0x, 299.1x, and 299.8x | A1 | 1996–2002, annual | 90 days before & 180 days after diagnosis | 3 to 17 | Medicaid |
| Heifert et al. (2016) | 299.0x, 299.8x, and 299.9x | B1 | October 2000–September 2013, all years used | Enrollment required 6 months pre- and post-diagnosis | 2 to 18 | Military Health System |
| Hisle-Gorman et al. (2018) | 299.0x, 299.8x, and 299.9x, (excluded cases with 299.1x or 330.8) | B1 | October 2000–September 2013, all years used | None | 2 to 18 | Military Health System |
| House et al. (2016) | 299.xx | A1 | 2007–2010, all years used | None | 0 to 17 | Private |
| Houghton et al. (2017) | 299.0x, 299.8x, and 299.9x | B1 | 2014 | None | 3 to ≥ 50 | Private and Medicaid |
| Jain et al. (2014) | 299.0x, 299.8x, and 299.9x (excluded cases with 299.1x or 300.8x) | B1 | 2001–2009, all years used | 6 | 0 to 20 | Private |
| Jain et al. (2015) | 299.0x, 299.8x, and 299.9x | B1 | 2001–2012, all years used | 60 | Cumulative to ages 5–11 | Private |
| Jariwala-Parikh et al. (2019) | 299.xx | A1 | 2006–2008, all years used | Continuous | 18 to 64 | Medicaid |
| Kalb et al. (2019) | 299.xx | B1 | 2010–2013, all years used | 12 | 12 to 17 | Private |
| Kang-Yi et al. (2016) | 299.xx | B2 | October 2008–September 2009 | None | 5 to 17 | Medicaid |
| Kennedy-Hendricks et al. (2018) | 299.xx | B1 | 2008–2012, all years used | None | 10 to 21 | Private |
| Khanna et al. (2013) | 299.xx | A1 | 2007 | 12 | Under 65 | Fee-for-service Medicaid |
| Lee et al. (2018) | 299.0x, 299.8x, and 299.9x (excluded cases with 299.1x or 300.8) | B1 | 2000–2013, all years used | 12 | 2 to 18 | Military Health System |
| Leslie and Martin (2007) | 299.xx | A1 | 2000–2004, annual | None | 0 to 17 | Private |
| Liu et al. (2017) | 299.0x and 299.8x | B1 | 2005–2013, all years used | None | 12 to 21 | Private |
| Liu et al. (2019) | 299.0x and 299.8x | B1 | 2005–2013, all years used | None | 12 to 21 | Private |
| Mandell et al. (2006) | 299.xx | B1 | 1994–1999, annual | None | 0 to 21 | Fee-for-service Medicaid |
| Mandell et al. (2008) | 299.00, 299.8, and 299.9 | A1 | 2001 | None | 0 to 21 | Medicaid |
| Mandell et al. (2010) | 299, 299.0x, 299.1x, and 299.8x | C1 | 2004 | 9 | 0 to 21 | Medicaid |
| Mandell et al. (2012) | 299.0x, 299.8x, and 299.9x | B2 | May 2003–October 2003 | None | 5 to 21 | Medicaid |
| Mandell et al. (2016) | 299.xx | A1 | 2008–2012, all years used (monthly prevalence estimates) | None | 0 to 21 | Private |
| Mandell et al. (2019) | 299.xx | B1 | 2008–2012, all years used | None | 0 to 21 | Private |
| Matone et al. (2012) | 299.xx | A1 | 2002–2007, all years used | 10 | 3 to 18 | Medicaid |
| McDermott et al. (2008) | 299.0x, 299.8x, and 299.9x | A1 | 2003 | 12 | 1 to 17 | Medicaid |
| Nathenson and Zablotsky (2017) | 299.x | C2 | 2000–2013, all years used | 12 | 16 to 23 | Private |
| Oswald and Sonenklar (2007) | 299.xx | A1 | 2002 | None | 0 to 20 | Private |
| Peacock et al. (2012) | 299.0x and 299.8x | C3 | 2003–2005, all years used | 11 | 1 to 17 | Medicaid |
| Peng et al. (2009) | 299.xx and 330.8 | A1 | 1998–2004, all years used | None | 0 to 20 | Medicaid |
| Rubenstein and Bishop (2019) | 299.0x, 299.8x, 299.9x, F84.0, F84.5, and F84.9 | B1 | 2008–2018, all years used | None | ≥ 21 | Medicaid |
| Rubin et al. (2009) | 299.0x, 299.8x, and 299.9x | A1 | 2001 | None | 3 to 18 | Medicaid |
| Saloner and Barry (2019) | 299.xx | B3 | 2009–2013, all years used | None | 0 to 18 | Private & state employee PPO plans |
ASD autism spectrum disorder, HMO health maintenance organization, ICD-9-CM International Classification of Diseases, Ninth Revision, Clinical Modifications, ICD-10-CM International Classification of Diseases, Tenth Revision, Clinical Modifications
a
Type of algorithm: (A1) No second claim needed; first claim in any position, (A2) At least one claim in a primary diagnosis field is required, (B1) 2 or more claims, separate days/encounters, (B2) 2 or more claims, separate days/encounters, both in first field, (B3) 2 or more claims, separate days/encounters, at least one in first field, (C1) 2 or more claims on separate days/encounters or 1 inpatient claim, (C2) 2 or more claims in first position on separate days/encounters or 1 inpatient claim