Racial Ethnic Disparities in Youth With Type 1 Diabetes Participating in Diabetes Summer Camps
Abstract
OBJECTIVE Diabetes camps are beneficial for campers and include benefits such as increases in diabetes knowledge, glycemic control, and psychological functioning. Racial/ethnic minority youth are likely to have poorer disease management and glycemic control. We hypothesized that minority youth with type 1 diabetes have reduced participation in diabetes summer camps.
RESEARCH DESIGN AND METHODS We analyzed deidentified data from 5,256 campers with type 1 diabetes who participated in a network of 48 American Diabetes Association–affiliated summer camps in 2018, and we compared participation rates by racial/ethnic category to the most recent SEARCH for Diabetes in Youth study prevalence rates.
RESULTS Camper demographics were significantly different than in the general population of children with type 1 diabetes (P < 0.001). Minority youth were more likely to attend day camp, be first-time campers, and request financial aid, and they were less likely to be on insulin pump therapy or use continuous glucose monitors.
CONCLUSIONS Racial/ethnic minority youth with diabetes are underrepresented in diabetes camps nationwide.
Introduction
Racial/ethnic minority youth are consistently shown to have poorer disease management and glycemic control and more diabetes-related complications (1,2). Some studies have shown that attending a diabetes camp has significant benefits for participating youth (3–7), including increases in diabetes-related knowledge, glycemic control, and psychological functioning. We sought to determine if minority youth with type 1 diabetes (T1D) have reduced participation in diabetes summer camp programming.
Research Design and Methods
Retrospective data were collected (with institutional review board approval) from the American Diabetes Association (ADA) 2018 summer camp registration database. Deidentified data from 5,256 campers with T1D from 48 ADA-affiliated camps were collected through a comprehensive questionnaire completed online by caregivers. Participant age, sex, race/ethnicity, date of diabetes diagnosis, and socioeconomic status were obtained. Data on camp name, location, type (day or residential), length, and cost were available. Participants reported whether it was their first time attending diabetes camp, method of insulin administration (insulin pump or injections), use of continuous glucose monitor (CGM), and most recent hemoglobin A1c (HbA1c).
To address our primary aim, we used χ2 analysis and resulting standardized residuals (≥|2|) to compare the racial/ethnic makeup of camp participants to the most recently available (2009) racial/ethnic makeup of youth with diabetes across the U.S. from the SEARCH for Diabetes in Youth (SEARCH) study (8,9). We also conducted exploratory analyses (one-way ANOVA, Tukey honestly significant difference tests, and χ2 analyses) to better understand existing differences between non-Hispanic white campers and the largest racial/ethnic minority groups of campers (Hispanic and black campers).
Results
Camp Characteristics
Campers attended day (20.9%) or residential camps (79.1%) across 26 U.S. states with 48 ADA-affiliated programs (Supplementary Fig. 1). Camps were located throughout the U.S. including northeast (10.7%), southeast (10.7%), midwest (49.5%), southwest (11.7%), and west (18.0%) regions. Most campers (69%) had previously attended diabetes camp. Camp sessions ranged from 2 to 13 days; day camps (mean = 4.2 days, SD = 1.0) were shorter on average than residential camps (mean = 6.6 days, SD = 1.4). Camp costs varied from $0 to $1,400. Day camps were less expensive on average (mean = $156.49, SD = $122.10, range $0–$450) than residential camps (mean = $621.35, SD = $265.87, range $0–$1,400). Need-based financial aid was requested from the ADA by 26.8% of campers, of which 86% received financial aid. Support ranged from 5% to 100% of camp fees, with most campers receiving 50% or more of the fee.
Camper Characteristics
Camper age was 4–18 years (mean = 11.8 years, SD 2.8 years); 55% were female; and most identified as Caucasian (83.7%). Household income was reported by 74.3% (n = 3,906) of campers, and 14% reported more than $150,000 per year, while 49.9% reported less than $75,000 per year and 14% reported less than $25,000. Most campers (73.1%) used insulin pump therapy, and 58% used a CGM. Mean camper-reported HbA1c was 8.3% (SD = 1.4%, range 4–15%; 67 mmol/mol). Campers’ sociodemographic and clinical characteristics are presented in Supplementary Table 1.
Racial/Ethnic Camp Attendance
We compared the proportion of youth across five racial/ethnic categories in the ADA 2018 camp registration database to 2009 SEARCH published data (Supplementary Fig. 2). Camper demographics were significantly different from expected given the general population of youth with T1D (P < 0.001). The effect size was between small and medium (φ = 0.22). White youth (z = 7.5) and American Indian youth (z = 2.0) were more likely to attend camp than expected. Hispanic (z = −14.1), black (z = −6.1), and Asian/Pacific Islander (z = −3.9) youth were less likely to attend.
Racial/Ethnic Differences in Camp Registry Data
Racial/ethnic differences for camp variables (camp type, first-time camper, financial aid requested) were statistically significant (P < 0.001) (Table 1). Effect sizes were generally small (φ 0.06–0.22). Hispanic youth were more likely to attend day camp (z = 3.5). White youth were less likely to be first-time campers (z = −2.0) or to request financial aid (z = −3.7). Black (z = 5.1) and Hispanic (z = 3.4) youth were more likely than expected to be first-time campers and request financial aid (z = 10.9 and 5.5 respectively).
Racial/Ethnic Group Differences in Camp and Disease-Related Variables
Diabetes Management and Outcome Disparities
Racial/ethnic differences in diabetes management and outcome variables (insulin delivery, CGM use, HbA1c) were statistically significant (P < 0.001) (Table 1). White youth were less likely to report using insulin injections (z = −3.2) and more likely to use a CGM (z = 2.3) than expected. Black (z = 10.4) and Hispanic (z = 3.6) youth were more likely to be on insulin injections and less likely to use a CGM (z = −7.3; −2.3 respectively). Mean camper-reported HbA1c was significantly different across racial/ethnic groups (P < 0.001). The difference approached a medium effect size (η2 = 0.04).
Conclusions
In examining the largest-known diabetes camp database, we found that racial/ethnic minority youth with T1D are underrepresented in diabetes camps nationwide. While we know that racial/ethnic disparities exist in prescribed regimens and health outcomes in T1D, this is the first report of disparities in diabetes camp attendance. There are many benefits to attending diabetes camps (3–7), and our results highlight the importance of identifying barriers to minority youth participation to improve access to these services.
Black and Hispanic campers have lower rates of camp attendance than expected based on the most recent SEARCH data (8). Minority youth are also more likely to be first-time campers, to attend day camps as compared with residential camps, and to request financial aid. Cultural preferences, geographic location, and cost likely influence minority youth attendance. For example, while most campers attend residential camps and there are more of these camps in existence, Hispanic youth were much more likely to attend day camps.
Diabetes camp costs ranged from $0 to $1,400, with no difference in the cost of camps attended by minority youth. However, minority youth were more likely to request financial assistance. Although there was a robust system for accessing financial aid, which reduces the likelihood that these disparities are due to socioeconomic status, it is possible that individuals may not know scholarship funds exist or feel comfortable requesting aid.
Despite a high rate of diabetes technology use at camp, we found that insulin pump and CGM use was higher in white than in black or Hispanic campers (2,10–13). While the mean HbA1c for campers was 8.3%, similar to reported averages in this age group (10), we also noted significantly higher average HbA1c for minority youth (10,12,14).
Study strengths include a large sample size from diverse communities and a wide income strata drawn from the largest network of diabetes camps in the nation. While the results show clear disparities in diabetes camp attendance, the reasons for these disparities cannot be identified through camper registration data alone. Limitations of the present data include that HbA1c and insulin regimens were patient/parent reported and that information regarding health insurance and parent education level were incomplete. Finally, while camper data are from 2018, the most recently available diabetes prevalence data in the U.S. was published in 2017 documenting incidence and prevalence up to 2009; thus, there is a 9-year gap. Further, the SEARCH study reports prevalence data for ages 0–19 years, and camp registrants were limited to ages 4–18 years. Therefore, these age differences may potentially affect differences detected in this comparison (9).
In summary, racial/ethnic minority youth are underrepresented in diabetes camps nationwide. Future research should focus on identifying barriers to camp attendance in minority communities so that outreach programs may be designed to increase minority participation in the diabetes camp experience.
Article Information
Duality of Interest. S.E.R., K.A.M., and M.T.M. are employees of the ADA. No other potential conflicts of interest relevant to this article were reported.
Author Contributions. J.M.V. and R.M.W. designed the study, analyzed the data, and wrote the manuscript. S.E.R. had full access to the data, prepared the de-identified data, and contributed to the methods and study design. K.A.M. and M.T.M. contributed to study design and critical revision of the manuscript. J.M.V. and R.M.W. are the guarantors of this work and, as such, had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Prior Presentation. Parts of this study were presented in abstract form at the 78th Scientific Sessions of the American Diabetes Association, Orlando, FL, 22–26 June 2018.
Footnotes
This article contains Supplementary Data online at https://care.diabetesjournals.org/lookup/suppl/doi:10.2337/dc19-1502/-/DC1.
- Received July 28, 2019.
- Accepted December 31, 2019.
- © 2020 by the American Diabetes Association.
Readers may use this article as long as the work is properly cited, the use is educational and not for profit, and the work is not altered. More information is available at https://www.diabetesjournals.org/content/license.
References
In this Issue
