Anxiety and Risk Perception in Parents and Children Identified by Screening as High-Risk - PowerPoint Presentation

1. Anxiety and Risk Perception in Parents and Children Identified by Screening as High-Risk for Type 1 Diabetes Cristy Geno Rasmussen, PhDAssistant Professor of Pediatricswww.ASKhealth.org

2. Autoimmunity Screening for Kids (ASK), 2017-2022 Screened >30,000 Colorado general population children 1-17 y oldPrevalence of pre-symptomatic T1D - 1.0% (95%CI –0.9- 1.1%)Prevalence of celiac disease/autoimmunity - 2.1% (1.9- 2.3%)1Diabetic Ketoacidosis (DKA) at diagnosis of diabetes in screened children <5% vs. 58% in children not screenedEvidence of cost-effectiveness of the screening2Increased community awareness of T1D and CD211. Stahl MG, Geno Rasmussen C, Dong F, et al. Mass Screening for Celiac Disease: The Autoimmunity Screening for Kids Study. Am J Gastroenterol. 2021;116(1):180-187.2. McQueen RB, Geno Rasmussen C, Waugh K, et al. Cost and Cost-effectiveness of Large-scale Screening for Type 1 Diabetes in Colorado. Diabetes Care. 2020;43(7):1496-1503.

3. ASK Protocol3Initial psychosocial data collected at baseline education and monitoring visit and repeated every 3-6 months during follow-up visits to assess anxiety and risk perception3www.ASKhealth.org

4. Study PopulationChildren screened at private pediatric or community health clinics72% were  ≤10 years of age5% had first degree relative (FDR) with T1DASK represents the multiracial population of Denver, with fewer than 40% of children classified by their parents as non-Hispanic white4Data collected between July 2020 and Dec 2021

5. Objective:5To explore child anxiety in first 6 months of participation in ASK follow-up study in comparison with parental anxiety and risk perception in same cohort

6. Psychosocial health impactImplications of screeningCommunication of resultsTailored support to families who have at-risk children to monitor effectivelyUnderstanding of risk Alleviate anxiety6

7. Methods for measuring parental anxiety and risk perceptionAnxiety about risk of developing type 1 diabetes was assessed using a modified 6-item State Anxiety Inventory3 (SAI),which has been used in several other studies of at-risk children; a SAI score of >40 denotes elevated anxiety. Accuracy of risk perception in the parent was assessed based on a single question.Changes in anxiety and risk perception was assessed by comparing differences between first and second follow-up visit.73. 1970 Charles D. Spielberger. All rights reserved in all media. Published by Mind Garden, Inc. www.mindgarden.com. This instrument was modified from the original by: Suzanne Bennett Johnson, PhD., Florida State College of Medicine.

8. Parental Anxiety: ResultsAt baseline, parental anxiety was elevated (SAI>40) in 74%; mean 46.1Parents of non-Hispanic white children had lower mean SAI (42.3) than parents of Hispanic (49.3) or all other race/ethnicity (46.5) Higher anxiety was associated with lower educational attainment; parent with less than high school degree had mean SAI of 51.7 compared to parents with post graduate degree with SAI mean of 39.6No difference in anxiety scores by FDR status at baseline8

9. Factors Associated with Parental Accuracy of Risk Perception (N=280)9EffectOR95% Wald Confidence LimitsP ValueHigher Risk vs Lower Risk1.40.72.60.3Positive Family History vs Negative Family History3.61.112.00.04Post-Graduate School vs < High School 11.03.238.2<0.001Non-Hispanic White vs Hispanic and All Other2.21.14.60.03Parental SAI3 >40 vs <=402.61.25.50.013. 1970 Charles D. Spielberger. State Anxiety Inventory (SAI) All rights reserved in all media. Published by Mind Garden, Inc. www.mindgarden.com. This instrument was modified from the original by: Suzanne Bennett Johnson, PhD., Florida State College of Medicine.

10. Parental Anxiety by Accuracy of Risk Perception and Family History of T1DAccuracy of Risk Perception Family History of T1D SAI MEAN95% Confidence LimitsAccurateN48.345.850.8AccurateY54.349.059.5InaccurateN44.742.347.1InaccurateY37.026.547.5Parents who reported accurate risk perception and have a family history of T1D have higher anxiety scores than those without family history.However, parents who reported inaccurate risk perception and have a family history of T1D, have lower anxiety scores that those without family history.10

11. Parental Anxiety and Risk Perception Between VisitsAt the 2nd follow-up visit, mean SAI decreased from 45.0 to 43.3 (p=.03).Decrease in SAI between visits was most notable in parents of children with family history of T1D (p=0.02), parents with higher risk children (p=0.01) and those with less than a high school education (p=0.006)Accuracy of risk perception did not change significantly between visits regardless of reporting parent and the presence of a family history 11

12. Parental Risk Perception: ResultsRoughly half (49%) of the parents accurately estimated risk at baseline visit. No change at second follow-up visit. Risk perception was more accurate in parents who had children with high-risk vs low-risk autoantibodies (61% vs 38%; p<0.0001).Risk perception more accurate in parents of FDR (83% vs 46%; p=0.004). Moderators of risk perception accuracy include minority status, education, and anxiety level. 12

13. Summary of Parent DataReduction in anxiety between visits may indicate potential for additional reduction in anxiety with increased education, monitoring, and additional family support. Lack of change in accuracy of risk perception between visits warrants greater exploration as to whether inaccurate risk perception contributes to risk of DKA at onset of type 1 diabetes.  Parents with inaccurate risk perception and higher anxiety require close monitoring supported through targeted telemedicine support to encourage home glucose monitoring or use of CGM.    13

14. 14Child anxiety at enrollment by demographic characteristics  NMedian (IQR 25%-75%) Total14138.2 (32.9-43.5)Child’sRace-ethnicityHispanic, any race7540.8 (32.9-43.5)Non-Hispanic White5838.2 (32.9-43.5)All Other 840.8 (38.2-44.8)Parent Education< High School3340.8 (35.6-46.1)High School Graduate / GED2338.2 (35.6-46.1)Post-Secondary2940.8 (32.9-40.8)College Graduate2335.6 (32.9-46.1)Post-Graduate 1938.2 (32.9-46.1)Child Anxiety by Race/Ethnicity and Parent Education

15. Child Anxiety by Autoantibody Status and Family History15Child anxiety at enrollment by diabetes statusNMedian (IQR 25%-75%)Total14138.2 (32.3-43.5)Autoantibody statusLower Risk7138.2 (32.9-43.5)Higher Risk7038.2 (32.9-43.5)Family HistoryYes940.8 (35.6-40.8)No13238.2 (32.9-43.5)

16. Child Anxiety: ResultsAt baseline, 51.8% of children reported SAI <40 and 48.2% reported SAI >40; median SAI at baseline was 38.2Children with family history (n=9) had a median SAI of 40.8, compared to those without family history (38.2)Non-Hispanic white children had a median SAI of 38.2, whilst Hispanic children had a median SAI of 40.8. There were no significant differences in the child anxiety data between visit 1 and visit 2. Accuracy of child’s risk perception to be analyzed in near future.16

17. Future DirectionsDevelopment of targeted educational materials to support families who may have inaccurate risk perception or excess anxiety.Translation of research into practice working in tandem with PCPs and specialists. 18

18. 33,000+ ASK participants and their parents:Our sponsors: Our partners:18Thank You!