Transitioning to Adolescence with Type 1 Diabetes: Evidence-based Interventions to Optimize Health and Psychosocial Outcomes

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Transitioning to Adolescence with Type 1
Diabetes Evidence-based Interventions to
Optimize Health and Psychosocial Outcomes

• Barbara J. Anderson, Ph.D.
• Professor of Pediatrics
• Baylor College of Medicine
• Houston, TX

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Overview of Presentation

• Clinical context of type 1 diabetes (T1DM)
  management in 21st century.
• Normal development from school aged through
  early adolescence Lessons from research on
  youth with T1DM during this transition to
  adolescence.
• 3. Review my clinical research with
  transitioning teens and their parentsat Joslin
  Clinic and at Baylor/TCH

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• I. Clinical context of type 1 diabetes (T1DM)
  management in 21st century.

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I. Advances in the management of type 1
diabetes in 21st century

• New types of insulin (basal, rapid acting)
• Very portable Blood Glucose (BG) monitors
• Yet, adherence is a problem!
• Continuous BG monitors
• Advances in insulin delivery systems (pumps)
• No closed loop system yet

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Landmark Studies Impact the Care of Youth with
T1DM

• Data from DCCT demonstrate that BG levels kept as
  close to normal as possible reduce the risk of
  microvascular complications of T1DM (NEJM, l993).
• Data from EDIC demonstrate that a period of
  optimal glycemic control early in the course of
  diabetes, has a protective effect against later
  macrovascular complications of T1DM (NEJM, 2005).

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Landmark Studies Impact the Care of Youth with
T1DM

• Intensive management, aimed at physiologic
  insulin replacement with multiple daily
  injections or insulin pump therapy, has become
  the standard of care for youth with T1DM, per
  Guidelines of ADA ISPAD.

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The Paradox of Progress Facing 21st Century
Families Living with DM

• Innovations in insulin delivery, insulin types,
  and BG monitoring technologies make intensive
  management, near-normal BG control, reduced
  risk of long-term complications of T1DM a
  reality.
• Practical, financial, cognitive, emotional
  burdens of diabetes management are increasing for
  children and parents and for pediatric diabetes
  teams.

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The Paradox of Progress Facing 21st
Century DM Teams

• Increased technology for DM mgt. requires
  increased education of pt./family, with
  increasing workload on multidisciplinary diabetes
  teams, in era of health care cost containment.

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The Paradox of Progress Facing 21st
Century DM Teams

• Barriers to optimal glycemic control for families
  include time demands of DM management, balancing
  with quality of life, diabetes burn-out in
  adolescents, and family conflict (Anderson et
  al, 2002).
• Need for low-cost, effective interventions to
  support intensive management in pediatric
  diabetes.

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• II. Normal development from school aged
  through early adolescence Lessons from research
  on youth with T1DM during this transition to
  adolescence.

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II. Normal Developmental Tasks of School Age
youth (6-10 yr.) and parents

• Explosion of skills (cognitive, athletic,
  artistic, physical)
• Importance of dyadic friendship and team play
• Foundations of self-esteem
• Child must participate with peers
• Parent must balance childs expanding world with
  setting reasonable limits foster autonomy while
  maintaining involvement in childs world.

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Lessons from research on T1DM in School-Aged Youth

• 1) Since 1990, research consistently documents
  that parent child working together to manage
  diabetes predicts better adherence improved
  glycemic control. Brought about a clinical
  paradigm shift
• The Old Message (pre-1990) The child with
  diabetes must be independent in disease
  management.
• The New Message (post-l990) The child with
  diabetes must work interdependently with parents,
  and this teamwork must change with development.

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Normal Developmental Tasks of Young Transitioning
Teens (11-13 yr.) and parents

• Pubertal changes impact self-image.
• Peers increase in value (vulnerable).
• Privacy is important.
• Power shifts in P-C relationship increase family
  conflict.
• Parent learns to acknowledge this is a period of
  insecurity and intensity, to negotiate, to have
  consistent expectations, to set limits, to
  maintain involvement support.

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Lessons from research of T1DM in Young
Transitioning Teens-1

• Over the transition to adolescence, data from
  Wysocki( ISPAD, 2005) show an increase in childs
  responsibility for DM tasks in DM conflict
  with parent with simultaneous deterioration in
  adherence and glycemic control.

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Child Responsibility by Age Group(Wysocki, 2005)
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Diabetes Conflict by Age Group(Wysocki, 2005)
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Adherence by Age Group(Wysocki, 2005)
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HbA1C by Age Group(Wysocki, 2005)
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DCCT Adult Adolescent Cohorts
Adults Adolescents
DCCT N Engl J Med. 1993 J Peds, 1994
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DCCT Adolescents Vs Adults

• significantly higher A1cs
• Intensive-8.1 vs 7.1, Conventional-9.8 vs 9.0
• significantly more severe hypoglycemia
• intensive- 86 vs 57/100-pt-yrs
• conventional- 28 vs 17/100-pt-yrs
• had significantly more DKA than adults
• Intensive- 2.8 vs 1.8/100-pt-yrs
• Conventional- 4.7 vs 1.3/100-pt-yrs

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Lessons from research on T1DM in Young
Transitioning Teens-2

• Research consistently documents that
  parent-involvement in, and low p-c conflict
  around, DM tasks is related to improved adherence
  and glycemic control in young teens with T1DM.
• (Anderson et al, 2002, 2007 Cameron et al,
  2005 Gray et al,2000 Laffel et al, 2003)

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From late school-age to early adolescence (10
14 years)

• Increasing
• ? P-C DM Conflict
• ? Child Sole Responsibility
• ? HbAlc

• Decreasing
• ? Parent Involvement
• ? Adherence

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Lessons from research of T1DM in Young
Transitioning Teens-3

• Prospective, longitudinal studies report that
  early in the course of diabetes, patterns (i.e.
  tracking) are established in
• a) childs adherence behaviors
• b) family support/involvement family conflict
  behaviors
• c) metabolic control (A1c)
• (Grey et al, 1999 Hauser et al, 1990 Kovacs et
  al, 1996)

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Implications for improving adolescent health
outcomes
1. Intervene during the transition to
adolescence. 2. Intervene early in the course
of diabetes with potentially modifiable family
factors (e.g., parent/child DM teamwork
parent/child DM conflict) that promote adherence
and optimal glycemic control. 3. With
limited health care resources to implement
intensive therapy, ? need for cost effective
interventions which are translatable across
pediatric practices
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Research Initiatives to Optimize Adherence and
Glycemic Control

• 4 pediatric randomized-controlled trials reviewed
  in a meta-Analysis by Winkley et al, ( BMJ,
  2006)
• Coping Skills Training (Gray)
• Behavioral Family Systems Therapy (Wysocki)
• Multisystemic Therapy (Ellis)
• Teamwork Intervention (Anderson)
• Concluded Pediatric interventions had moderate
  effect on glycemic control, while adult
  interventions had no effect.

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Research Initiatives to Optimize Adherence and
Glycemic Control

• Coping Skills Training small group sessions led
  by trained therapist
• Behavioral Family Systems Therapy multiple
  family sessions led by trained therapist
• Multisystemic Therapy delivered in home by
  trained therapist
• Teamwork Intervention integrated into regular
  clinic visits delivered by research assistant

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• III. Review my clinical research with
  transitioning teens and their parentsat Joslin
  Clinic and at Baylor/TCH

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III. Research Question
In youth recently diagnosed with Type
1 DM (lt 5 years), will a brief, family-focused
intervention as part of routine ambulatory care
over a 2-year period prevent the expected ? in
adherence, ? in metabolic control, and ? in
parent involvement without ? family conflict over
DM management?
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Inclusion/Exclusion Criteria

• 10-15 years
• Duration of diabetes gt 6 mos., lt5 yrs.
• No serious medical/psychiatric co-morbidities
• Lived with family in home
• No plans to re-locate to new area
• Established Joslin patient, w/at least 2 visits
  in past year

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Treatment Groups
GROUP 1 TEAMWORK INTERVENTION Involved parent
and child for 20 min. with a curriculum
interacting with an RA, integrated into a regular
follow-up diabetes outpatient medical visit with
a multidisciplinary team over 2 years GROUP 2
STANDARD CARE Patients had routine follow-up
diabetes outpatient medical visit with a
multidisciplinary team over 2 years. Family
receives the curriculum in book form at the end
of 2-year period.
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Research Design
Session 1 T1DM and your Family
Blame and Shame
TW
Meal planning
Inter- dependence
Randomized
BGM and A1c
Session 4 Teamwork
Burnout
Session 8 Review
SC
Baseline Evaluation
Year 1 Evaluation
Year 2 Evaluation
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Map of the Family Project
Session 2 Tools for Diabetes care Blood sugar
monitoring A1c
Session 4 Sharing the burden Identifying blood
sugar patterns
Session 3 Talking about blood sugars Avoiding
blame and shame
Session 1 Diabetes and the Family Challenges of
diabetes
Session 8 REVIEW
Session 7 Miscarried helping Interdependence Red
ucing conflict
Session 6 Preventing burn-outAchieving
flexibility
Session 5 Flexibility in meal
planningCarbohydrate counting
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Intervention Curriculum

• Preventing Diabetes burnout and Miscarried
  helping
• Improving Family communication about DM
• Reducing and preventing conflict
• Fostering realistic expectations/avoiding
  perfectionism
• Building Parent-Child DM teamwork

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Family Communication and Conflict
? How you think about DM... - What does a
blood sugar of 400 mean for my child?- Why is
his/her DM getting worse? ? How you feel about
DM- Im scared when I see a blood sugar of
400. Why cant s/he have stable blood
glucose levels? ? How you talk about DM -
That blood sugar is so bad! What did you eat?
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Sample Session 3Responding to Blood Sugars

• Exercise
• Stress
• Illness
• Insulin
• Not Enough Food
• Unknown

• Growth/Puberty
• Stress
• Illness
• Dawn phenomenon
• Too little insulin
• Food
• Unknown

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Sample Session (cont.)
That scares me! A high blood sugar like that
could cause problems!
Dads really mad at me! Hed be happier if my
blood sugar were 120 or if I didnt check at all!
385?! Why so high? What did you eat?
Dad, my blood sugar is 385.
1) OCCASIONAL HIGH BLOOD SUGARS DONT LEAD TO
COMPLICATIONS. It is normal for growing children
to have out-of-range blood sugars. An occasional
blood sugar of 300 or even 400 or more will not
cause complications. 2) THERE IS NO SUCH THING
AS A BAD BLOOD SUGAR. Any result from blood
sugar monitoring is good because it gives helpful
and important information that lets you make the
best choices in insulin, activity, and food.
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Sample Session (cont.)
A Closer Look at the Vicious Cycle
High or Low Blood Sugars
Families feel frustrated Discouraged
Families may worry about complications
Kids Dont Want to Check Find it Harder to Tell
the Truth
Parents May Accuse Criticize
Kids Feel Discouraged Blamed
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Baseline Pt. Characteristics
Teamwork (n50) Standard Care (n50)
Age (yrs) 11.9 2.4 12.2 2.2
T1DM Duration (yrs) 2.7 1.6 2.7 1.6
Gender ( male) 54 52
BMI (kg/m²) 19.8 3.1 21.3 3.7
Developmental Stage ()
Pre-pubertal (Tanner I) 38 36
Pubertal (Tanner II-IV) 50 48
Post-pubertal (Tanner V) 12 16
BMI was significantly different between groups
at baseline. The Teamwork group had significantly
more single parent families at baseline. There
was no significant difference in parental SES
between groups at baseline.
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Baseline Diabetes Characteristics
Teamwork (n50) Standard Care (n50)
Insulin (U/kg/day) 0.9 0.2 0.9 0.3
Mode of Insulin Therapy ()
2 inj/day 52 54
3 inj/day 40 42
4 inj/day 8 4
Pump 0 0
BGM (times/day) 3.7 3.5
A1c () 8.4 1.3 8.3 1.0
No significant difference between groups in BGM
frequency at baseline.
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A1c by Group Assignment


p.03 (SC at baseline vs. SC at year 2) p.05
(SC vs. Teamwork at year 1)
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Parental Involvement in BGM
?²4.57, df1, p0.03
Optimal involvement was defined by meeting one of
the following criteria 1) parental involvement
increasing, 2) parental involvement staying the
same, or 3) parental involvement decreasing
moderately if still above the median
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Quality of Life by Group Assignment


Quality of Life Score
p0.02 (child Teamwork at year 2 vs. child
Teamwork at baseline)
p0.05 (parent Teamwork at year 2 vs. parent
Teamwork at baseline)
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Study Group and BGM Frequency Predict Glycemic
Control


Percent with A1c ? 8.0
In a significant multivariate model controlling
for gender, age, T1DM duration, and insulin
therapy, Teamwork group assignment (P0.02) and
increased BGM frequency (P0.001) were the only
significant predictors of achieving A1c ? 8.0.
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Summary

• Teamwork intervention
• After 1 yr., HbA1c improved significantly
  compared with SC at a time when HbA1c usually
  deteriorates due to intensification of the
  disease process and ? family involvement and ?
  adherence.
• After 2 yrs., prevented expected deterioration
  in HbAlc.

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Summary

• Teamwork intervention
• At 1 yr. and 2 yr., ? family involvement,
  especially with BGM.
• 4. At 2 yrs. ? in youth quality of life
  compared with the SC group.

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To Engage Young Adolescents in Diabetes
Management

• Set realistic goals for self-care behavior, for
  BG, for weight. Avoid perfectionism!
• Help Teen and Parent negotiate diabetes care.
• To prevent Burn- Out, acknowledge validate
  patients negative feelings about diabetes
  praise all self-care efforts!
• Model to parent how to avoid shame and blame
  language of good/bad blood sugar

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Conclusions
  ? An office-based family-focused teamwork
intervention significantly ? glycemic control
while not ? family conflict. ? With limited
healthcare resources, implementation and
evaluation of similar interventions for intensive
diabetes management should be considered in the
standard therapy of youth with T1DM.
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• FMOD is sponsored by the National Institute of
  Child Health and Human Development (NIHCD)
• Multi-site study involving 4 sites
• Coordinating Center and central laboratory
• Six-month pilot feasibility study followed by a 2
  year intervention trial at all 4 sites

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The Family Management of Diabetes
(F-MOD) Trial

• Multi-site NICHD-funded trial.
• Largest randomized controlled clinical
  intervention study of T1DM youth and families
  Family-based problem-solving intervention vs.
  Usual care.
• Recruitment began February, 2006. Study duration
  is 2 years.

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The FMOD Study is funded by the National
Institute of Child Health and Human Development
at four clinical sites around the U.S.
Joslin Diabetes Center Boston
Childrens Memorial Hospital Chicago
NICHD and Coordinating Center
Texas Childrens Hospital Houston
Nemours Childrens Clinic Jacksonville
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Summary

• The paradox of progress in 21st Century
• PROs CONs
• Better tools Increased burden of
• Better BG control care on
  pts./teams
• Lower risk Increased need for
• More hope parenting skills
  training
• 2. Research on young teens (10 - 14 years) with
  T1DM indicates that over this period, adherence
  parent involvement decline conflict HbAlc
  increase.

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Summary

• 3. Family-focused and clinic-based interventions
  can prevent the anticipated deterioration in
  adherence and glycemic control which begin at
  puberty.

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Research Collaborators

• Joslin Team
• Multidisciplinary staff of Joslin Pediatric
  Unit
• Lori Laffel, MD, chief
• Baylor/ Texas Childrens Hospital Team
• Multidisciplinary staff of TCH Diabetes
  Care
• Center,
• Morey Haymond, MD, chief
• Siripoom McKay M.D., Co-Investigator
• Wendy Levy, LCSW, Project manager