supporting young adults with diabetes: changing systems to address the issues

AADE14ANNUAL MEETING & EXHIBITION

AUGUST 6-9, 2014

ORLANDO, FL

Supporting Young Adults with

Diabetes: Changing systems to

address the issues

Christina Roth

Chief Executive Officer & Founder

College Diabetes Network

Boston, MA

Jodie M. AmbrosinoPhD

Associate Research Scientist

Yale School of Medicine

New Haven, CT

Cari BergetRN, BSN, CDE

Barbara Davis Center for Diabetes

University of Colorado, Denver

Denver, CO

Gary ScheinerMS, CDE

AADE Diabetes Educator of the

Year 2013

Owner and Clinical Director

Integrated Diabetes Services

Wynnewood, PA

Disclosures to Participants

Notice of Requirements For Successful Completion:

• Please refer to learning goals and objectives.

• Learners must attend the full activity and complete the evaluation in order to claim continuing

education credit/hours.

Conflicts Of Interest and Financial Relationships Disclosures:

• None

Non-Endorsement Of Products:

• Accredited status does not imply endorsement by AADE, ANCC, ACPE or CDR of any

commercial products displayed in conjunction with this educational activity.

Off-Label Use:

• Participants will be notified by speakers to any product used for a purpose other than that for

which it was approved by the Food and Drug Administration.

Purpose & Learning Objectives

Purpose: Describe new methodologies used to support and enhance the quality of patient centered care

Learning Objectives:1. Describe the unique needs of young adults with diabetes,

and identify current gaps in care

2. Identify tools and resources available to young adults with diabetes

3. Describe clinical models and initiatives being successfully used to reach and support young adults with diabetes

4. Highlight initiatives and organizations that support their clinic’s young adult patients with diabetes and promote independence in T1D care.

Diabetes Registry Data in

Adolescents and Young Adults

• T1D Exchange Clinic Registry

– >25,000 individuals >1 to <90 years

– 70 diabetes centers in US

• Ped adult, mixed ped/adult centers

Young Adults with DiabetesAverage HbA1c significantly higher than ADA guidelines & increasing

7.00%

7.50%

8.00%

8.50%

9.00%

<6 6-<13 13-<18 18-<26 26-<50 ≥50

8.2%

8.3%

8.7%

8.4%

7.7%

7.6%

8.3%

8.4%

9.0%

8.7%

7.7%

7.6%

Enrollment

Current

Age (years)

Mean

Hb

A1c (

%)

T1D Exchange Data, 2014

0%

20%

40%

60%

80%

51%

31%

47%

50%

53%

63%

57%59%

51%

62%

55%53%

65%

60%

Enrollment

Current

Young Adults with DiabetesOnly population with no increase in insulin pump use

T1D Exchange Data, 2014

Age (years)

Mean

Hb

A1c (

%)

0%

5%

10%

15%

20%

25%

30%

3% 3%2%

5%

18%

15%

9%

6%

4%5%

19%18%

Enrollment (6% useCGM overall)

Current (9% use CGMoverall)

Young Adults with DiabetesOnly population with no increase in CGM use

T1D Exchange Data, 2014

Age (years)

Mean

Hb

A1c (

%)

Average Current HbA1c by Age

7

7.5

8

8.5

9

0 10 20 30 40 50 60 70 80

T1D Exchange Data, 2014Age (years)

Mean

Hb

A1c (

%)

Should Transfer to Adult Clinic be the Main Goal?

57% 55% 55%

26% 25% 25%

17% 20% 21%

0%

20%

40%

60%

80%

100%

Adult Pediatric Mixed

Often/Very Often Sometimes

8.4%8.3%

8.6%8.5%

8.7% 8.7%

7.5%

8.0%

8.5%

9.0%

9.5%

HbA1c over Prior 12 Months*Most Recent HbA1c**

Adult Pediatric Mixed

15% 16% 18%

44% 45% 45%

26% 25% 22%

15% 13% 15%

0%

20%

40%

60%

80%

100%

Adult Pediatric Mixed

≥7 5-6

# BG Checks per day

17% 19%13% 14%15% 15%

-10%

0%

10%

20%

30%

40%

50%

60%

HbA1c over Prior 12Months*

Most Recent HbA1c**

Adult Pedriatic Mixed

Frequency of missed insulin doses Mean HbA1c

Proportion with Mean HbA1c <7.0%

Raymond JK, Maahs D, Klingensmith GJ, T1D Exchange Writing Group. The Impact of Type of Diabetes Practice on

Glycemic Control in Young Adults with Type 1 Diabetes. Poster presented at The International Society of Pediatric and

Adolescent Diabetes Annual Meeting, Gothenburg, Sweden, October 2013.

Contributing Factors

Life• No routine and unpredictable

schedules/ Late nights

• Stress

• Alcohol and drugs

• No stable support system,

new friends

• Social pressures

• Wanting to be normal

• Limited food options

• Desire for spontaneity

• Financial concerns

• Forming identity

• Priorities evolve throughout

college years

Diabetes• Transition of care

• Transition to independent

management

• Increased responsibility

• Less parental involvement

• Registration with “Disabilities

services”

• Responsibility for informing

professors

• No support resources or

education typically available

on campus

Diabetes in College:The perfect storm of young adulthood

• At any given time, there are an estimated 53,000

college students with Type 1 diabetes in the

United States

• The majority of college students with diabetes do

not leave home when it is time to go to college

• 71% of college students report having difficulty

managing their diabetes while at school

The College Diabetes Network (CDN)

CDN is a 501c3 non-profit organization, whose MISSIONis to empower and improve the lives of students living with Type 1 diabetes through peer support and access to information and resources.

2009 2014

THE CDN MODEL

Resources and information

on how to navigate

diabetes in college

Campus communities that

connect you with other

young adults with diabetes

Making your environment

and supporters better

prepared to support you

NetworkTools Ecosystem

YOUNG

ADULT

…

Clinicians

Campus

Health

Friends &

Roommates

Parents

Campus

Faculty

CDN Chapters

• A CDN Chapter creates a student community on

campus that is centered on helping young adults with

Type 1 diabetes to feel supported and thereby lead

healthy and productive lives.

• Chapters allow students to connect with each other

about diabetes, learn about the latest diabetes

technology and gadgets, exchange tips and tricks for

managing diabetes on campus, and anything else that

students are interested in discussing.

Young Adult Resources

• CDN website and CDN Student E-Update

• Online Forums/Communities• TuDiabetes, Glu, etc.

• Events• DECA Dtreat, regional peer-led young adult

retreats

• Bringing Science Home, Students with Diabetes annual conference

• Connected in Motion, Slipstreams

• “Off to College” Events

Takeaways from the Source:

TIPS FOR CLINICIANSProvided by CDN Students• Ask me about my life outside of

diabetes

• Be positive! Avoid criticism, judgment, and negativity

• Don’t be afraid to bring up “taboo topics” such as alcohol, sex, and drugs

• Peers are an important piece of the diabetes care team, and should be acknowledged as such

• Acknowledge the spontaneity and lack of routine of college and help make a plan of attack

“The best thing my clinician did for me as I was preparing to leave for school was to tell me about the College Diabetes Network.”

- CDN STUDENT

Changing Systems to Address Issues

The most effective intervention/solution at

this time is PEER SUPPORT

Innovative clinical approaches:

• Telehealth/Remote communication

• Use of data and technology

• Transition to college events

• Group visits

• Supporting life between visits: embracing patient communities and organizations

Transitioning Young Adults with Diabetes

to Independent Living

Gary Scheiner MS, CDEOwner/Clincial DirectorIntegrated Diabetes ServicesWynnewood, PA

Keys to Success

• The Message • The Medium

The Medium: Integrated Diabetes Services

• Multidisciplinary Team of CDEs with Diabetes

• Office based near Philadelphia

• 100% Private-Pay

• In-Office or Remote Consultation

• Clients: Children, Adults, Caregivers

• Focus Intensive Insulin Therapy

The Medium: Unique Service Options

• Phone appointments

• Video Chat Appointments

• E-Mailing

• Text messaging

• Ongoing “retainer” services

– Monthly scheduled appts.

– Unlimited correspondence in-between

The Medium: Data Management

• Web-based downloads (ex: Diasend, Carelink, T-Connect)

• Smartphone Apps (ex: SiDiary, dBees, iBGstar)

• Meter/CGM Software (ex: Studio, CoPilot, 360, GlucoFacts, Zoom)

• Electronic logsheets

The Message

• Individualized Care

• Non-Judgemental

• Both BG Management & Education

• Centered Around Client’s Needs/Interests– Technology Updates

– Lifestyle / Weight Control

– Sports & Exercise

– Hypoglycemia Avoidance

– Sex, Drugs, Rock & Roll

The MessageShared Responsibilities

• Parent/Caregiver

– Monitor, Oversee

– Establish (realistic) Ground Rules

– Enforce the Rules

• Emerging Adult With Diabetes

– Perform daily management tasks

– Communicate with parent/caregiver

– Stay in regular contact with HCP

The MessageCollege Prep

• Supplies

• Security

• Hypo Education

• Illness Protocols

• Communication Plan

• Special Accommodations

• Sex, Drugs, Rock & Roll

A Model of Care for Young Adults

With Diabetes

Jodie M. Ambrosino, PhD

Pediatric Psychologist

Yale Children’s Diabetes program

New haven, CT

Yale F.A.B. Transition Program

FORGE Ahead © (12-17 years old)

• Form new relationships

• Orient to the future

• Reach out for support

• Gain new knowledge & self-advocacy

• Embrace the future

Bridge Clinic (18+ year old)

• patients who are in college/working full-time/parents themselves

• 6-12 months before physical transition to adult care

• Interdisciplinary visits to provide guidance, education, support

**Transition is a process, not an event**

Goal: FORGE Ahead & BridgeEase them into adult health care

Empower them to take charge of their health

Set them up for long-term success!

Yale’s Bridge Transition Visits• Bridge clinic medical visits (alternating physician & nurse practitioner)

– Assess knowledge and educate (alcohol, driving, contraception)

– Screen for complications, initiate medication (BP, lipids, celiac)

– Provide referrals to providers (GI, adult PMD, etc.)

– Coordinate additional visits (care coordinator “concierge”)

– Identify potential providers (YDC or outside referral)

– Set up new routines and personal practices (health notes; checklists)

• Psychosocial visit(s) (with psychologist)

– Assess psychosocial issues/needs (screening questionnaires)

– Address barriers to care (depression, FOH, disordered eating)

• Nutrition & pump refresher visit (Dietician, diabetes educator, nurse practitioner)

– (re)educate regarding carb-counting, Celiac diet

– Discuss pump feature, new pumps, sensors, etc

Yale Transition Psychosocial

Screening (18+ years)

1. Knowledge: Type 1 Diabetes Knowledge Quiz

2. Depression: Patient Health Questionnaire (PHQ-8; Spitzer et al)

3. Diabetes Distress: Diabetes Distress Survey (DDS, Polonsky)

4. Hypoglycemia: Fear of Hypoglycemic Survey (FOH; Gonder-

Frederick)

5. Diabetes Care: Self-Care Inventory (SCI; Helgeson, et al.)

6. Eating issues/insulin omission: The Disturbed Eating

Problems Survey (DEPS; Markowitz, et al )

Screening Measures (N=43)

Index Score

Age at enrollment 19.7 ± 1.4 years Range: 18-24 years

Age at diabetes diagnosis 9.01 ± 4.5 years ------

HbA1c 8.5% 5.6% - 14.5%

Knowledge 84% correct ± 12.2 50% - 100%

Depressive Symptoms 4.1 ± 4.3 9% met clinical cutoff

Diabetes Distress Score 29.1 ± 14.9; Range11-93 18% met clinical cutoff

Fear of Hypoglycemia Behavior: 15.1 ± 8.4

Worry: 18.3 ± 16.7

Range: 0-39

Range: 0-64

Diabetes Self Care (Item) 3.5 ± 0.52

Diabetes Eating Problems

Survey

12.7 ± 9.8; Range 0-42 23% met clinical cutoff

Diabetes Distress and A1c

0.0

2.0

4.0

6.0

8.0

10.0

12.0

14.0

16.0

0 20 40 60 80 100

En

roll

men

t A

1c (

%)

Diabetes Distress

r= + 0.58

Disordered Eating and A1c

0.0

2.0

4.0

6.0

8.0

10.0

12.0

14.0

16.0

0 10 20 30 40 50

En

roll

men

t A

1c (

%)

Disordered Eating Survey Score

r= +0.65

Fear of Hypoglycemia--Worry

0

2

4

6

8

10

12

14

16

0 50 100

r= +0.37

Enrollment A1c

0

10

20

30

40

50

0 50 100

Disordered Eating

r= +0.55

Stressors Identified by Young

Adults

59%

11%

9%

9%

6%6%

School or training

Job or finances

Family

Diabetes

Mental Health

Weight or body image

College Events

• Off-to-College Day – Staying in touch; continuity of care

– Self-advocacy, Office of Disability

– Sick day plan

– Travel

– Exercise

– Alcohol, drugs

– Resources

– Survival Kit

– Panel

• College Student Dinner– Disclosure to roommates

– Stress of changing schedules

– Availability of nutritional information

– Moving on

“It was helpful meeting &

hearing from others with

diabetes”

FORGE Ahead Events

• Teen Day

– Meet others with diabetes

– Carb counting;

– BG as data

– Tug-of-war between independence & dependence

– Family conflict

– Stress and Burnout

– Satisfaction = 4.5 (out of 5)

I like being with others who have diabetes!!

Monitoring Transition Readiness

Provide own medical history

Discuss role of insulin in body

Adjust insulin levels for carb intake and BG levels

Discuss what HbA1c level means

Talk about goal BG and HbA1c levels

Assess psychosocial comorbidities

Explain how exercise affects BG levels

Know when it is not safe to drive, how long to wait to after low

Explain effect of alcohol on body

Explain possible long-term complications of T1D

Explain sick day management plan

Order insulin, test strips, and ketone strips

Make doctor’s appointments

Identify insurance plan and what is covered

Keep track of insurance claims Walker, K.A., 2013

Summary• A team approach is essential to address the multiple domains

of care

• Time is needed to approach the barriers to care and optimize outcomes

• Young adults and their parents welcome supportive group events and appreciate hearing from one another

• Transition needs to be…..

Purposeful

Planned

Gradual

Transition Team Acknowledgements• Ania Jastreboff

• Kate Weyman

• Sylvia Lavietes

• Sheila Quinn

• Katherine Loftus

• Melisa Bogus

• Paulina Rose

• Eileen Tichy

• Melinda Zgorski

• Patty Gatcomb

• Bill Tamborlane

• Stu Weinzimer

• Lori Carria

• Amy Steffen

• Jenn Sherr

• Kristin Sikes

• Andrea Urban

• Jan Davey

• Geri Spollett

• Silvio Inzucchi

• Judy DeChello

Innovative Approach to Team-Based

Care of Adolescents and Young Adults

with Type 1 Diabetes

Cari Berget RN, BSN, CDE

AADE 2014 August 7, 2014

Adolescents and Young Adults

• Current approaches– Labor intensive

– Expensive

– Resources required

– Not universally applicable

• New approach– Feasible, sustainable

– Early intervention

– No additional time commitment

– No additional resources

– Generalizable

– Diabetes camp to clinic?

It’s Time to Think Outside the Box

Change Clinical Care Structure

• Shared Medical Appointments

• Successful

– Prenatal care, “Centering”

– Chronic medical conditions

– Routine healthcare maintenance

– Urgent care visits

– Pediatric clinics

Shared Medical Appointments

• Improved patient outcomes

• Increased satisfaction

– Providers and patients

• Improved efficiency

– Including billing

• More comprehensive visits

“Team Clinic”

• Innovative approach to routine medical care

• Multi-disciplinary team

• Development– Positive psychology framework

– MI techniques (OARS)

– Self-efficacy, self-advocacy

– Resiliency

– Social support

• Parent component

Family

Provider

Patient

Team Clinic-Ice-breakers

-Patient-driven, facilitator-mediated

-Set visit goal

-Review goals

-Discuss plan

-Answer ?s

-Normal development + diabetes

-Set visit goal

-Ice-breakers

-Patient-driven, facilitator-

mediated

-Set visit goal

-Normal development + diabetes

-Set visit goal

Patient one-

on-one with

provider

Patient

Provider

Family

-Review Goals

-Discuss Plans

-Answer Q’s

High School and T1D

Challenges

• More independence

• More time away from

parents

• Less oversight

• Risk taking behaviors

• Believe they can do it

• No formal education in

management

Team Clinic Approach

• Peer interactions

• Appreciate autonomy

• Respect independence

• Patient driven

• Focus on their agenda

• Less structure

– Ice breaker

– Their questions

– Incorporate activities

High School Team Clinic

Responses• As explained by a patient…

• “…it starts out weird and

uncomfortable…make you introduce

yourself…then you get to talk about what you

want to talk about…and learn from others who

understand…and it becomes the best visit you

have ever had…and you want to come

back…you will like it…trust me”

1.61 1.61

19.35

41.94

35.48

I Learned New Info

StronglyDisagree Disagree

Neutral

Agree

StronglyAgree

4.92

18.03

40.98

36.07

I Felt More Comfortable Asking Questions

StronglyDisagree

Disagree

Neutral

Agree

StronglyAgree

3.23

8.06

43.55

45.16

I Would Recommend This to Others

StronglyDisagree Disagree

Neutral

Agree

StronglyAgree

1.61

12.90

40.32

45.16

I Would Like to Attend Again

StronglyDisagree

Disagree

Neutral

Agree

StronglyAgree

77.4% Agree or Strongly Agree 88.7% Agree or Strongly Agree

77.1% Agree or Strongly Agree

77% Agree or Strongly Agree 88% Agree or Strongly Agree

77% Agree or Strongly Agree 86% Agree or Strongly Agree

High School Parent

Responses

“I don’t know if it is changing his

diabetes, but we fight less. He is more

comfortable talking about diabetes. He

looks forward to clinic.”

4.764.76

14.29

33.33

42.86

I Learned New Info

StronglyDisagree

Disagree

Neutral

Agree

Strongly Agree

4.76

9.52

23.81

61.90

I Felt More Comfortable Asking Questions

StronglyDisagree

Disagree

Neutral

Agree

Strongly Agree

4.76

14.29

80.95

I Would Recommend This to Others

StronglyDisagree Disagree

Neutral

Agree

StronglyAgree

4.76

19.05

76.19

I Would Like to Attend Again

StronglyDisagree

Disagree

Neutral

Agree

Strongly Agree

76.2% Agree or Strongly Agree 95.2% Agree or Strongly Agree

85.7% Agree or Strongly Agree 95.2% Agree or Strongly Agree

76% Agree or Strongly Agree 95% Agree or Strongly Agree

85% Agree or Strongly Agree 95% Agree or Strongly Agree

Beyond High School

Beyond High School and T1D

Challenges

• On their own

• Environment may not

necessarily know T1D

• Risk taking behavior

• Lack of frontal lobe

development

Team Clinic Approach

• Peer interactions

• No parents

• Patient driven

• Logistics

– RX

– Appointments

– Changing docs

– Relationships

– Work

4.17

16.67

62.50

16.67

I Learned New Info

StronglyDisagree

Disagree

Neutral

Agree

Strongly Agree

79% Agree or Strongly Agree

4.17

58.33

37.50

I Felt Supported

StronglyDisagree

Disagree

Neutral

Agree

StronglyAgree

4.17 4.17

8.33

58.33

25.00

I Would Recommend This to Others

StronglyDisagree

Disagree

Neutral

Agree

StronglyAgree

4.17

12.50

58.33

25.00

I Felt More Comfortable Asking Questions

StronglyDisagree

Disagree

Neutral

Agree

StronglyAgree

4.178.33

62.50

25.00

I Would Like to Attend Again

StronglyDisagree

Disagree

Neutral

Agree

StronglyAgree

87% Agree or Strongly Agree 95% Agree or Strongly Agree 83% Agree or

Strongly Agree

83% Agree or Strongly Agree

Beyond High School

• Most challenging population

• New approach

– Meet them where they are…

Diabetes Telehealth Intervention

• SMA telehealth intervention for young

adult patients at BDC

• Telehealth groups where YA patients log in

to SMA appointment where

ever they are through their

own computer/device

• More to come…

Baby Steps• Not hate clinic

– More comfortable, ask questions

• Come to clinic more regularly– Medical consumers for life

• Stay in system = make it to adult care

• Improve adherence

• Eventually impact A1c, complications, medical expense

• Next step = randomized, controlled trial

Resources for Providers

• Through CDN:

– New clinician webpage• Models of Care and Transition Checklists

– Endocrine Society

– American Diabetes Association

– National Diabetes Education Program

– Transition event/program sign up

– Interest group sign up with CDN

– Sign up to receive CDN materials and brochures for your clinic

Thank you!

• Questions and Comments:

– Christina Roth, croth@collegediabetesnetwork.org

– Gary Scheiner, gary@integrateddiabetes.com

– Jodie Ambrosino, jodie.ambrosino@yale.edu

– Cari Berget, cari.berget@ucdenver.edu