Together on Diabetes Project: A Diabetes Prevention and Management Program for American Indian Youth

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1 Together on Diabetes Project: A Diabetes Prevention and Management Program for American Indian Youth International Meeting on Indigenous Child Health, March 2017 Presenters: Marissa Begay, Nicole Neault

2 Faculty/Presenter Disclosure Marissa Begay has no relevant financial relationships with the manufacturer of commercial services discussed in this CME activity Nicole Neault has no relevant financial relationships with the manufacturer of commercial services discussed in this CME activity The faculty do not intend to discuss an unapproved/investigative use of a commercial product/device in this presentation

3 Johns Hopkins Center for American Indian Health at the Bloomberg School of Public Health Founded in 1991 by Dr. Mathu Santosham, following research since 1980 with Southwestern tribes Mission: To work in partnership with American Indian and Alaska Native communities to raise AI/AN health status, self-sufficiency and health leadership of AI/AN people to the highest possible level

4 Center focused on employing Native staff who are doing outreach and health research in their communities, and Native faculty to assist with training of AI/AN scholars at JHU Building local work force capacity

5 Changing the Future: Working Across the Lifespan Respecting the Circle of Life Teen Pregnancy/STI prevention Celebrating Life Suicide Prevention Maternal and Child Immunization Birth Early Childhood Family Spirit 0-3: Parenting/Healthy Start Arrowhead Youth Entrepreneurship Middle Childhood Adolescence Together on Diabetes Family Health Coach Model Native Vision Health and Education Promotion Higher Ed Scholarships Adulthood EMPWR Risk Reduction & Counseling Pneumonia Prevention

6 Together on Diabetes (TOD) Program Sites Navajo Nation Chinle, AZ Shiprock, NM Tuba City, AZ White Mountain Apache Whiteriver, AZ Location of Program Sites Navajo Nation: 3 sites White Mountain Apache UTAH COLORADO ARIZONA Albuquerque Phoenix NEW MEICO Tucson 1

7 TOD Target Population Primary Target Population: Youth (ages 10-19) Secondary Target Population: Support Person (>18 years)

8 TOD Inclusion Criteria 1) American Indian youth aged years old at study enrollment. 2) Resides within ~ 1-hour transportation range of the health facility in Chinle, Shiprock, Tuba City, or Whiteriver. 3) Referral from a hospital provider indicating a diagnosis of pre-diabetes or type 2 diabetes by qualifying lab test OR considered at-risk for type 2 diabetes based on BMI 85 th percentile and qualifying lab test.

9 TOD Intervention Overview Intervention Components Home-based, delivered by Family Health Coach Youth Sessions Intervention Phase: 12 Biweekly lessons (0-6 months) Maintenance Phase: 6 Monthly lessons (7-12 months) Provider visits to IHS, with youth/parent permission Support Person Sessions 4 Lessons (0-12 months) Community Wide Activities Community Advisory Board Meetings Partnerships with health promotion activities / events

10 TOD Evaluation Measures Evaluation Measures collected at: Baseline, 3 months, 6 months, 12months Youth Support Person Demographic Questionnaire (Baseline only) Knowledge Quiz Psychosocial Patient Health Questionnaire-9 Pediatric Quality of Life Inventory Behavioral Physical Activity Recall Food Frequency Questionnaire Diabetes Screening Self Report Medical Home, Family Responsibility and Communication Measures Community Mastery-Family Scale Diabetes Family Responsibility Questionnaire Medical Home Assessment Physiological BMI HbA1c Blood Pressure Waist Circumference Medical Chart Review (at 12 months only review of prior 24 months) Satisfaction Questionnaire (6 and 12 months only)

11 TOD Pilot Trial Enrollment Final Enrollment = 256 Youth Participants = 225 Support Persons

12 TOD Retention - Youth % Completed: Baseline: 100% 6- Month: 81.6% 12-Month: 84.8% # of Participants

13 Lesson Completion - Youth Lessons Completed (max=12) 12 Month Follow-up Mean (SD) % of Total Lessons 9.95 (3.38) 82.9% %(n) Participants Completed 8 Lessons 73.4% (188)

14 TOD Trial Outcomes: Youth Knowledge N= 254 ***p-value<.0001 compared to baseline Adjusted for age at baseline and total number of lessons completed

15 Pediatric Quality of Life Measures N=255 Baseline Mean (SD) 6 months Mean (SD) 12 months Mean (SD) PQL Total (0.98) (0.97)*** (0.85)*** PQL Physical Health ( 1.09) (1.07)*** (0.96)*** PQL Psychosocial Health (1.07) (1.08)*** (0.96)*** PQL Emotional Health (1.33) (1.31)*** (1.39)*** PQL Social Health ( 1.38) (1.50)** (1.28)*** PQL School Health (1.30) (1.31)*** (1.23)*** **p-value<0.01, ***p-value<0.001 compared to baseline. Adjusted for age at baseline and gender

16 TOD Trial Outcomes: Pediatric Quality of Life N=255 Healthy Children PQL Total Score: 83 1 Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001; 39:

17 TOD Trial Outcomes: Depression Screening Positive Depression Screening N=255 US Prevalence of Depression Among Adolescents (2013) % ***All p-values compared to baseline. 1

18 TOD Trial Outcomes: Physical Activity N=256 Days Physically Active 30 min in the Last Week Baseline %(n) 6 months %(n) 12 months %(n) 0 days 68.1% (172) 61.2% (126) 51.0% (105)*** 1 day 22.1% (56) 22.9% (47) 21.2% (44) 2 days 4.3% (11) 8.3% (17) 16.4% (34)*** 3 days 5.5% (14) 7.5% (15) 11.5% (24)* *p-value <0.05 **p-value<0.01 ***p-value<0.001

19 TOD Trial Outcomes: Physiologic Measures Physiologic Outcomes Baseline 6 Months p-value 12 Months p-value zbmi (N=255) Overall: Mean(SD) 2.19 (0.03) 2.17 (0.03) (0.04) Hypertensive (N=255) n (%) (systolic and/or diastolic>90 th ) 35.0% (90) 25.8% (54) % (63) HbA1c All: (N=251) Mean HbA1c (SD) 6.09 (0.09) 6.02 (0.08) (0.09) Baseline>6.5%: (N=29) Mean HbA1c (SD) 8.72 (0.46) 7.87 (0.51) (0.48) ***NOTE: HbA1c decreased from baseline values in 32.3% of Participants at 12 month follow-up (Range: ).

20 Youth: Program Satisfaction at 12 months I have learned a lot Agree Disagree Undecided The program was helpful Agree Disagree Undecided I would recommend this program to others Agree Disagree Undecided I feel that I am healthier Agree Disagree Undecided I feel that I am happier Agree Disagree 200 (92.6%) 2 (0.9%) 14 (6.5%) 199 (92.1%) 1 (0.5%) 16 (7.4%) 185 (86.5%) 5 (2.3%) 24 (11.2%) 184 (86.0%) 6 (2.81%) 24 (11.2%) 184 (85.6%) 3 (1.4%)

21 Impact of the Program on a Subset of Support Persons Physiologic Outcomes Timepoint 1* 12 Months p-value Weight, lbs (N=37) Mean(SD) (8.77) (8.72) ** BMI (N=35) Mean(SD) (1.57) (1.53) 0.020* Waist Circumference, cms (N=35) Mean(SD) (3.06) (3.04) *p-value <0.05 **p-value<0.01 *NOTE: Due to the small number of SP with baseline data, we averaged baseline and 3 month measures for all outcomes.

22 Summary of Results Youth Participants Increased knowledge Increased quality of life Decreased depression Increased physical activity Decreased BMI Decreased hypertension Decreased A1C in high-risk youth (HbA1c>6.5%) High program satisfaction

23 Key Next Steps Analyze medical chart review data and share findings Youth outcomes Cost effectiveness study using matched controls Potential intervention improvements: More support person lessons Connect graduates (including support persons) to new participants Integrate more traditional knowledge and practices Integrate more social media supports Identify partners and funders to scale and continue to improve and evaluate TOD

24 Acknowledgements Thank you to Tribal and University review boards for thoughtful review and approval processes Navajo Nation IRB # Phoenix Area IHS IRB # Johns Hopkins IRB # 4505 Thank you to all field staff, community partners, and participants who made this project possible Navajo Nation field-based faculty and staff: Dr. Raymond Reid, Leonela Nelson, Thomasina Blackwater, Gerilene Tsosie, Lisa Cohoe, Marissa Begay, Kendrea Begay, Nicole Watson, Ryan Grass, Jenny Richards, Kathy Charley, Stacie Tsinigine White Mountain Apache field-based faculty and staff: Owen Laluk, Tashaya Massey, Sean Parker, Keoni Hill

25 THANK YOU CONTACT: Johns Hopkins Center for American Indian Health N. Washington St., 4 th Floor Baltimore, MD Marissa Begay mbegay5@jhu.edu Nicole Neault nneault@jhu.edu

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