Division of Research, Kaiser Permanente Northern California, Pleasanton, California.
Kaiser Permanente Bernard J. Tyson School of Medicine, Pasadena, California.
JAMA Netw Open. 2024 Oct 1;7(10):e2442218. doi: 10.1001/jamanetworkopen.2024.42218.
An improved understanding of autism spectrum disorder (ASD) prevalence over time and across the lifespan can inform health care service delivery for the growing population of autistic children and adults.
To describe trends in the prevalence of ASD diagnoses using electronic records data from a large network of health systems in the US.
DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional study examined annual diagnosis rates in health records of patients in US health systems from January 1, 2011, to December 31, 2022. Eligible individuals were included in the study sample for a given calendar year if they were enrolled in a participating health system for at least 10 months out of the year. Data were extracted from 12 sites participating in the Mental Health Research Network, a consortium of research centers embedded within large, diverse health care systems.
Diagnoses of ASD were ascertained using International Classification of Diseases, Ninth Revision (ICD-9) and International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) revision codes. Annual diagnosis rates were calculated as the number of unique members diagnosed, divided by the total members enrolled.
A total of 12 264 003 members were enrolled in 2022 (2 359 359 children aged 0 to 17 years [19.2%]; 6 400 222 female [52.2%]; 93 002 American Indian or Alaska Native [0.8%], 1 711 950 Asian [14.0%], 952 287 Black or African American [7.8%], 2 971 355 Hispanic [24.2%], 166 144 Native Hawaiian or Pacific Islander [1.4%], and 6 462 298 White [52.7%]). The ASD diagnosis rate was greatest among 5-to-8-year-olds throughout the study period and increased by 175% among the full sample, from 2.3 per 1000 in 2011 to 6.3 per 1000 in 2022. The greatest relative increase in diagnosis rate from 2011 to 2022 occurred among 26-to-34-year-olds (450%) and increases were greater for female vs male individuals among children (305% [estimated annual percentage change (EAPC), 13.62 percentage points; 95% CI, 12.49-14.75 percentage points] vs 185% [EAPC, 9.63 percentage points; 95% CI, 8.54-10.72 percentage points], respectively) and adults (315% [EAPC, 13.73 percentage points; 95% CI, 12.61-14.86 percentage points] vs 215% [EAPC, 10.33 percentage points; 95% CI, 9.24-11.43 percentage points]). Relative increases were greater in racial and ethnic minority groups compared with White individuals among children, but not adults.
In this cross-sectional study of children and adults in the US, ASD diagnosis rates increased substantially between 2011 and 2022, particularly among young adults, female children and adults, and children from some racial or ethnic minority groups. Diagnosis prevalence trends generated using health system data can inform the allocation of resources to meet the service needs of this growing, medically complex population.
随着时间的推移和整个生命周期，对自闭症谱系障碍 (ASD) 患病率的认识不断提高，可以为越来越多的自闭症儿童和成人提供医疗保健服务。
使用来自美国大型医疗系统网络的电子记录数据，描述 ASD 诊断率的趋势。
设计、设置和参与者：本横断面研究分析了 2011 年 1 月 1 日至 2022 年 12 月 31 日期间美国健康系统中健康记录的年度诊断率。如果符合条件的个人在一年中至少有 10 个月在参与健康系统注册，那么他们将被纳入研究样本。数据从 Mental Health Research Network 中的 12 个站点中提取，该网络是嵌入在大型、多样化医疗保健系统中的研究中心的联盟。
使用国际疾病分类，第 9 次修订版 (ICD-9) 和国际疾病分类和相关健康问题，第 10 次修订版 (ICD-10) 修订版代码确定 ASD 诊断。每年的诊断率计算为诊断的独特成员数除以注册的总成员数。
共有 12264003 名成员在 2022 年注册(2359359 名 0 至 17 岁的儿童[19.2%]；6400222 名女性[52.2%]；93002 名美国印第安人或阿拉斯加原住民[0.8%]，1711950 名亚洲人[14.0%]，952287 名黑人和非裔美国人[7.8%]，2971355 名西班牙裔[24.2%]，166144 名夏威夷原住民或太平洋岛民[1.4%]，和 6462298 名白人[52.7%])。在整个研究期间，5 至 8 岁儿童的 ASD 诊断率最高，在全样本中增加了 175%，从 2011 年的每 1000 人 2.3 人增加到 2022 年的每 1000 人 6.3 人。从 2011 年到 2022 年，诊断率的最大相对增长率发生在 26 至 34 岁之间(450%)，女性的增长率高于男性，儿童的增长率为 305%(估计年增长率[EAPC]，13.62 个百分点；95%CI，12.49-14.75 个百分点)，而成年人的增长率为 185%(EAPC，9.63 个百分点；95%CI，8.54-10.72 个百分点)。在儿童和成人中，与白人相比，种族和族裔少数群体的相对增长率更高，但在成年人中并非如此。
在这项对美国儿童和成人的横断面研究中，2011 年至 2022 年间 ASD 诊断率大幅上升，特别是在年轻成年人、女性儿童和成年人以及某些种族或族裔少数群体的儿童中。使用医疗系统数据生成的诊断流行趋势可以为不断增长的、医疗复杂的人群分配资源提供信息。
