Prevalence of Type 1 Diabetes Among US Children and Adults by Age, Sex, Race, and Ethnicity

Abstract

This study uses data from the 2019 to 2022 cycles of the National Health Interview Survey to estimate the prevalence of type 1 diabetes among US youths and adults.

Life expectancy for persons with type 1 diabetes has increased over the past 15 years, contributing to growing prevalence.¹ The Centers for Disease Control and Prevention (CDC) estimated that 1.8 million US individuals had type 1 diabetes in 2021.² We updated estimates of type 1 diabetes prevalence and characterized rates in population subgroups.

Methods

We analyzed the 2019 to 2022 cycles of the National Health Interview Survey (NHIS), a nationally representative study of the noninstitutionalized US population. Data were collected through in-person and telephone interviews. Response rates from 2019 to 2022 ranged from 47.8% to 59.1% for youths (aged <18 years) and 48.9% to 59.1% for adults (aged ≥18 years). Sample weights were used to reduce nonresponse bias and produce distributions similar to those of the US census (eMethods in Supplement 1). The study was exempt from review per the Johns Hopkins Bloomberg School of Public Health as the data are publicly available and deidentified.

In youths, history of diagnosed diabetes was reported by an adult proxy. However, diabetes type was not ascertained. Consistent with the CDC, we calculated the percentage of diabetes cases in youths that were type 1 using published data from the SEARCH for Diabetes in Youth study (eMethods in Supplement 1).² We applied these percentages to estimates of diabetes prevalence in youths from the NHIS to calculate the prevalence of type 1 diabetes among US youths. In adults, we defined type 1 diabetes as a self-reported diagnosis of type 1 diabetes and current use of insulin.

We calculated the prevalence (and corresponding 95% CIs) of type 1 diabetes among youths and adults (per 1000) overall and across age, sex, and racial and ethnic subgroups. We combined data from the 2019 to 2022 cycles of the NHIS to improve precision. Analyses were conducted using Stata, version 17.0 and used recommended survey weights (eMethods in Supplement 1).

Results

The analysis included 110 283 adults (weighted mean [SE] age, 48.1 [0.12] years; 52% female; 48% male) and 30 708 youths (weighted mean [SE] age, 8.7 [0.04] years; 49% female; 51% male). Among youths, the reported prevalence of type 1 diabetes (per 1000) was 3.5 (95% CI, 2.8-4.4), with the highest rates among those aged 10 to 17 years (5.0; 95% CI, 3.9-6.4), males (4.0; 95% CI, 2.8-5.6), Hispanic youths (3.5; 95% CI, 2.3-5.2), and non-Hispanic White participants (3.9; 95% CI, 2.9-5.5) (Table 1). Among adults, the reported prevalence (per 1000) was 5.3 (95% CI, 4.8-5.8) and was highest among those aged 45 to 64 years (6.1; 95% CI, 5.2-7.1) and 65 years or older (5.3; 95% CI, 4.4-6.2), non-Hispanic Black participants (4.8; 95% CI, 3.7-6.3), and non-Hispanic White adults (5.9; 95% CI, 5.3-6.6) (Table 2).

Table 1. Prevalence of Self-Reported Diagnosed Type 1 Diabetes Among US Youths Younger Than 18 Years in the National Health Interview Survey, 2019-2022.

Characteristic	Unweighted No. of youths		Diabetes cases estimated to be type 1, %a	Weighted prevalence of type 1 diabetes, per 1000 youths (95% CI)
	All	With self-reported diagnosed diabetes
Overall	30 708	126	86.3	3.5 (2.8-4.4)
Age group, y
0-9	15 637	35	100	2.4 (1.5-3.8)
10-17	15 071	91	83.7	5.0 (3.9-6.4)
Sex
Female	14 909	67	83.3	3.0 (2.3-4.0)
Male	15 786	59	89.3	4.0 (2.8-5.6)
Race and ethnicityb
Hispanic	7577	35	74.6	3.5 (2.3-5.2)
Non-Hispanic Black	3163	12	70.7	2.6 (1.2-5.6)
Non-Hispanic White	15 955	66	96.5	3.9 (2.9-5.5)

^a Calculated using data reported in Lawrence et al.³

^b Race was self-reported by participants from a list created by National Health Interview Survey researchers (African American, Alaska Native, American Indian, Asian, Black, Native Hawaiian, Pacific Islander, White, and other). Participants could select more than 1 race and self-reported whether they were of Hispanic or Latino origin. We classified participants as being Hispanic, non-Hispanic Black, non-Hispanic White, or other. Estimates for participants from other racial and ethnic groups were not included because of small sample size. The other group included participants who were Alaska Native, American Indian, Asian, Native Hawaiian, Pacific Islander, multiracial, or other race. Race and ethnicity were assessed to characterize differences in the burden of type 1 diabetes.

Table 2. Prevalence of Self-Reported Diagnosed Type 1 Diabetes Among Adults Aged 18 Years or Older in the National Health Interview Survey, 2019-2022.

Characteristic	Unweighted No. of adults		Weighted prevalence of type 1 diabetes, per 1000 adults (95% CI)
	All	With self-reported type 1 diabetes
Overall	110 283	611	5.3 (4.8-5.8)
Age group, y
18-44	40 597	193	4.7 (3.9-5.6)
45-64	36 101	236	6.1 (5.2-7.1)
≥65	33 585	182	5.3 (4.4-6.2)
Sex
Female	59 834	301	5.0 (4.4-5.8)
Male	50 440	310	5.5 (4.8-6.3)
Race and ethnicitya
Hispanic	14 856	62	4.0 (2.9-5.4)
Non-Hispanic Black	11 957	70	4.8 (3.7-6.3)
Non-Hispanic White	74 410	449	5.9 (5.3-6.6)

^a Race was self-reported by participants from a list created by National Health Interview Survey researchers (African American, Alaska Native, American Indian, Asian, Black, Native Hawaiian, Pacific Islander, White, and other). Participants could select more than 1 race and self-reported whether they were of Hispanic or Latino origin. We classified participants as being Hispanic, non-Hispanic Black, non-Hispanic White, or other. Estimates for participants from other racial and ethnic groups were not included because of small sample size. The other group included participants who were Alaska Native, American Indian, Asian, Native Hawaiian, Pacific Islander, multiracial, or other race. Race and ethnicity were assessed to characterize differences in the burden of type 1 diabetes.

Discussion

Nearly 4 in every 1000 youths and 5 in every 1000 adults in the US reported having type 1 diabetes from 2019 through 2022. These results are consistent with the CDC’s estimates for 2021. This study adds to existing research by providing more precise up-to-date national estimates and by characterizing differences across subgroups.

Consistent with the study results, emerging evidence suggests a high prevalence of type 1 diabetes among middle-aged and older adults.⁴ However, data on these populations remain sparse. Clinical guidance is often extrapolated from studies of younger populations with type 1 diabetes or adults with type 2 diabetes. Further research is needed in older patients with type 1 diabetes to optimize cardiovascular and glycemic management.

There was also a substantial burden of type 1 diabetes in racial and ethnic minority youths and adults, extending findings from the SEARCH for Diabetes in Youth Study, which characterized racial and ethnic differences in type 1 diabetes prevalence among US youths from 6 clinical centers.³ These patients have less access to care and state-of-the-art diabetes technology, contributing to disparities in glycemic control and complications.⁵ More data on barriers to care are needed to inform interventions that advance health equity in populations with type 1 diabetes.

Study limitations include possible misclassification because autoantibodies were not measured. Self-reported diabetes in adults with type 1 diabetes has been externally validated.⁶ However, the reliability of extrapolating SEARCH data to estimate type 1 diabetes in youths may require further examination. Some subgroup estimates were imprecise due to small sample sizes. The response rate in the NHIS ranged from approximately 50% to 60% during the study period. Nonetheless, the analyses used recommended sample weights to reduce nonresponse bias.

Section Editors: Kristin Walter, MD, and Jody W. Zylke, MD, Deputy Editors; Karen Lasser, MD, Senior Editor.

Supplement 1.

eMethods

Supplement 2.

Data Sharing Statement