Upload
collegediabetes
View
301
Download
1
Embed Size (px)
DESCRIPTION
Christina Roth, Founder and CEO of the College Diabetes Network, presents at the American Association of Diabetes Educators 2014 Conference. Also presenting were Gary Scheiner, MS, CDE, owner and clinical director of Integrated Diabetes Services, Jodie Ambrosino, PhD, associate research scientist at Yale University School of Medicine in New Haven, Connecticut, and Cari Berget, RN, BSN, CDE, a pediatric nurse diabetes educator at the University of Colorado’s Barbara Davis Center for Childhood Diabetes in Denver.
Citation preview
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, [email protected]
– Gary Scheiner, [email protected]
– Jodie Ambrosino, [email protected]
– Cari Berget, [email protected]