Together on Diabetes Project: A Diabetes Prevention and Management Program for

American Indian Youth

International Meeting on Indigenous Child Health, March 2017Presenters: Marissa Begay, Nicole Neault

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

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

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

Changing the Future: Working Across the Lifespan

Birth

Early Childhood

Middle Childhood

Adolescence

Adulthood

“Family Spirit” 0-3:Parenting/Healthy Start

“Arrowhead” Youth Entrepreneurship

“Together on Diabetes”Family Health Coach Model

“Native Vision”Health and Education Promotion

Higher EdScholarships

“Celebrating Life” Suicide Prevention

“Respecting the Circle of Life”Teen Pregnancy/STI prevention

Maternal and Child Immunization

“EMPWR” Risk Reduction & Counseling

Pneumonia Prevention

Together on Diabetes (TOD) Program Sites

Navajo NationChinle, AZShiprock, NMTuba City, AZ

White MountainApache

Whiteriver, AZ

Location of Program SitesNavajo Nation: 3 sitesWhite Mountain Apache

1

UTAH COLORADO

NEW MEXICO

ARIZONAAlbuquerque

Tucson

Phoenix

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

TOD Inclusion Criteria1) American Indian youth aged 10-19 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 ≥ 85th percentile and qualifying lab test.

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

TOD Evaluation MeasuresEvaluation Measures collected at:Baseline, 3 months, 6 months, 12months Youth

Support Person

Demographic Questionnaire (Baseline only) X X

Knowledge Quiz X

PsychosocialPatient Health Questionnaire-9Pediatric Quality of Life Inventory

XX

BehavioralPhysical Activity RecallFood Frequency Questionnaire Diabetes Screening Self Report

XXX X

Medical Home, Family Responsibility and Communication MeasuresCommunity Mastery-Family Scale Diabetes Family Responsibility Questionnaire Medical Home Assessment

XXX

XX

PhysiologicalBMIHbA1cBlood PressureWaist Circumference Medical Chart Review (at 12 months only – review of prior 24 months)

XXXXX

X

XX

Satisfaction Questionnaire (6 and 12 months only) X X

TOD Pilot Trial EnrollmentFinal Enrollment = 256 Youth Participants

= 225 Support Persons

TOD Retention - Youth

% Completed: Baseline: 100%6- Month: 81.6%12-Month: 84.8%

# of

Par

ticip

ants

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)

Lesson Completion - Youth

TOD Trial Outcomes: Youth KnowledgeN= 254

***p-value<.0001 compared to baselineAdjusted for age at baseline and total number of lessons completed

Pediatric Quality of Life MeasuresN=255

BaselineMean (SD)

6 monthsMean (SD)

12 monthsMean (SD)

PQL Total 75.23 (0.98) 82.41 (0.97)*** 83.42 (0.85)***

PQL Physical Health 79.15 ( 1.09) 84.37 (1.07)*** 86.23 (0.96)***

PQL Psychosocial Health 73.12 (1.07) 81.33 (1.08)*** 81.88 (0.96)***

PQL Emotional Health 73.02 (1.33) 80.42 (1.31)*** 82.14 (1.39)***

PQL Social Health 77.97 ( 1.38) 83.15 (1.50)** 84.93 (1.28)***

PQL School Health 68.27 (1.30) 80.03 (1.31)*** 78.85 (1.23)*****p-value<0.01, ***p-value<0.001 compared to baseline.Adjusted for age at baseline and gender

TOD Trial Outcomes: Pediatric Quality of LifeN=255

Healthy ChildrenPQL Total Score: 831

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; 39:800–812.

Positive Depression ScreeningN=255

***All p-values ≤ 0.001 compared to baseline.

1http://www.nimh.nih.gov/health/statistics/prevalence/major-depression-among-adolescents.shtml

US Prevalence of Depression Among Adolescents (2013)1

10.7%

TOD Trial Outcomes: Depression Screening

TOD Trial Outcomes: Physical ActivityN=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

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) 0.027 2.16 (0.04) 0.018

Hypertensive (N=255) n (%) (systolic and/or diastolic>90th) 35.0% (90) 25.8% (54) 0.013 28.5% (63) 0.094HbA1cAll: (N=251)

Mean HbA1c (SD)

Baseline>6.5%: (N=29)Mean HbA1c (SD)

6.09 (0.09)

8.72 (0.46)

6.02 (0.08)

7.87 (0.51)

0.328

0.039

6.07 (0.09)

7.91 (0.48)

0.812

0.036

***NOTE: HbA1c decreased from baseline values in 32.3% of Participants at 12month follow-up (Range: -7.4 - -0.1).

Youth: Program Satisfaction at 12 monthsI have learned a lot

AgreeDisagreeUndecided

200 (92.6%)2 (0.9%)

14 (6.5%)

The program was helpfulAgreeDisagreeUndecided

199 (92.1%)1 (0.5%)16 (7.4%)

I would recommend this program to othersAgreeDisagreeUndecided

185 (86.5%)5 (2.3%)

24 (11.2%)I feel that I am healthier

AgreeDisagreeUndecided

184 (86.0%)6 (2.81%)

24 (11.2%)I feel that I am happier

AgreeDisagreeUndecided

184 (85.6%)3 (1.4%)

28 (13 0%)

Impact of the Program on a Subset of Support Persons

Physiologic Outcomes Timepoint 1* 12 Months p-value

Weight, lbs (N=37)Mean(SD) 216.4 (8.77) 210.5 (8.72) 0.0043**

BMI (N=35)Mean(SD) 38.12 (1.57) 37.28 (1.53) 0.020*

Waist Circumference, cms (N=35)Mean(SD) 122.14 (3.06) 120.48 (3.04) 0.152

*NOTE: Due to the small number of SP with baseline data, we averaged baseline and 3 month measures for all outcomes.

*p-value <0.05 **p-value<0.01

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

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

Acknowledgements Thank you to Tribal and University review boards for thoughtful review and approval processes

Navajo Nation IRB # 11.346Phoenix Area IHS IRB # 12.16Johns 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

THANK YOU

CONTACT:Johns Hopkins Center for American Indian Healthwww.caih/jhu.edu

415 N. Washington St., 4th FloorBaltimore, MD 21231410-955-6931

Marissa Begay mbegay5@jhu.edu

Nicole Neaultnneault@jhu.edu