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•10/15/2012
Growing Up with Diabetes:
Health Care Transition in
Adolescents with Diabetes
Amy Potter, MD
Assistant Professor, Pediatrics and Medicine
Vanderbilt Eskind Diabetes Clinic
Definitions
• Transition: “. . . the purposeful, planned
movement of adolescents and young adults with
chronic physical and medical conditions from
child-centered to adult-oriented health-care
systems.”
– A process which ideally takes place over years
• Transfer of Care:
– Hand-off from pediatric to adult provider
– One episode during the process of transition
J Adol Health 1993;7:570-576
Goals of Transition
• Maximize lifelong functioning and well-being
• Uninterrupted services from adolescence to
adulthood
• Timing should be individualized, ideally age 1821
Pediatrics 2011;128:182-200
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Clinical Vignette 1
• 22 year old dx with type 1 diabetes age 16
• Started pump therapy 2 years after diagnosis
• Had
10.3
H d peak
k A1C off 10
3 around
d 22-33 years after
ft
diagnosis, associated with nonadherence,
possible mild depression
• Gradual improvement with increasing adherence
and increased independence
• Most recent visit: A1C 6.7, just graduated
college, no complications
Clinical Vignette 2
• 24 yo man with type 1 diabetes since age 10
• Followed in pediatric clinic until age 12, then lost to follow up
• Returned to practice at age 17
– In group home
home, only in 10th grade
– Essentially on his own for diabetes management
• Seen in pediatric clinic until age 20, then lost to follow up for 1 year
• Reappears in adult ER in DKA, ran out of insulin, A1C 11.2
• Followed up once in adult clinic, then 16 months later– at that visit reports
working 2 jobs, commutes from Bowling Green to Nashville, uninsured
• Most recent follow up 1 year later: A1C 10; working at gas station, going to
college, still uninsured
Clinical Vignette 3:
• 17 yo with type 2 diabetes, dev. delay, autism
– Diabetes well controlled on metformin alone
– Patient will remain in school until age
g 21
• Mom wants your opinion on whether she needs
to obtain guardianship for patient – talked to
other parents and received conflicting opinions.
Quoted costs of $1200-2000.
• What do you tell her? Are there other things she
needs to think about? Where can she go for help?
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Transition Issues Common to
All Adolescents
• Important for all adolescents, most important for those with
p
health care needs
special
• Majority of children with chronic illness survive to adulthood
• Factors affecting success of transition: family/adolescent,
providers, system
• Reluctance to change
• Many organizations have called for improvement of
transition processes but many obstacles exist and programs
remain small and localized
Transition Barriers: Patient/Family
• Reluctant to leave “known” providers/system for
“unknown” adult system
• Parents may be concerned that adult provider does not have
k
knowledge/experience
l d /
i
to
t care for
f patient
ti t
• Patient may lack skills to interact with adult provider, to
advocate for themselves, or even to carry out tasks such as
refilling prescriptions/making appointments
• Parent may fear loss of control as adolescent moves to
patient-centered adult care
• Differing expectations of adult vs. peds providers may be
intimidating or uncomfortable to patient/family
Transition Barriers: Pediatric Providers
• May be reluctant to “let go” of patients
• May have concerns about adult provider’s ability to care
for patients with specific conditions
• May be unfamiliar with available adult providers or not
be prepared to help patient/family local adult providers
• Can either help or hinder adolescent’s development
toward independence
• May inadvertently give mixed messages to patient/family
about transition to adult practice
• Often do not do a good job of preparing patient/family for
transition
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Transition Barriers: Adult Providers
• Internists generally have little to no training in
adolescent medicine
• May be unfamiliar or uncomfortable with
childhood diseases
• In one study, medicine residents rated
themselves deficient in most skills related to
adolescent medicine
• Tend to be patient rather than family focused
• Adolescents may not be comfortable in practices
with mainly older adults
Transition Barriers: System Issues
• Pediatric and adult care systems may have age limits
• Insurance issues:
– Adult providers may not take same insurance
– May be harder to find adult provider on public insurance
– Fewer resources available to young adults
– Patients who qualify for Medicaid as children may not
qualify as young adults
– Pre-existing condition coverage requirement does not
take effect until 2014
• Communication issues, lack of shared records; distance
between pediatric and adult providers
Transition Experience in Type 1
Diabetes (T1D)
• More date for diabetes than other chronic
conditions but still not much
• Most data based on surveys, descriptive
studies
• Intervention studies few, have
methodological issues
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T1D and Transition: Survey Data
• 1992: 81 patients 18-23 yo dx before age 16
• 41% still seeing peds endo; 20% family medicine;
17% internal medicine; 12% adult endocrinologist;
10% unspecified
• 8/81 had complications by self report
• 21 of 68 patients who provided samples had
microalbuminuria
• Average A1C 13%
• Almost 90%reported keeping 2 or more clinic
appointments in last year
•J Dev Behav Pediatr 1992;13:194-201
T1D and Transition: Survey Data
•
•
•
•
•
1993: survey of patients in an “under-25” clinic
Mean age at time of study 20.7 years clinic
Mean duration 8.5 yrs
Average transition age 15.9
15 9 yrs
Asked to compare peds vs. adult clinics (41 patients)
– Pediatric staff emphasized school progress, family
relations
– Adult providers emphasized exercise, blood glucose levels
– No difference in emphasis on diet, insulin management, or
patient privacy
Diabetic Medicine 1993;10:285-289
T1D and Transition: College
• Ramchandani et al 2000–surveyed 42 college students with
T1D living away from home
– mean age 20.6 yrs
– 3 students on pumps
p p
– 51% were taking at least 4 injections/day
• No sig change in A1C from senior yr of HS to study yr
• 58.1% had worsened control, 38.7% had better control
• Diet and exercise most frequently cited reasons for changes in
control
• Lack of parental involvement seen as worsening control
• Diabetes perceived as more difficult to manage in college
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Mean A1C for Male Patients by Age
Bryden et al. 2001
Mean A1C for Female Patients by Age
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Do transition programs work?
• 1989 survey showed 25% of graduates did not have follow up
2-4 years later
• Instituted formal transition program targeting teens, parents,
and health professionals
professionals, with workshops and other strategies
• At follow up 2-4 years after graduation, 71 of 76 had regular
follow up; teens with no follow up had worst control in year
prior to graduation … BUT
• Siminero et al surveyed ISPAD members and found majority
of programs did NOT have transition programs
Frank et al 2002 (Toronto)
Do Transition Programs Work?
•
•
•
•
More recent data suggests that some interventionsmay improve
glycemic control and acute complications:
– self-management education for the adolescent
– Special clinics (various models)
– Extra services: after-hours care, transition coordinators
However, all studies have methodological issues and short follow
up
One large study (~1500 patients) found that having some physician
continuity reduced the likelihood of hospitalization after transfer to
the adult service
Most of the few studies available are from Canada and UK and
thus not directly generalizable to US system
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Working Through Transition
• AAP, AFP, and ACP released a Clinical Report in 2011
• Recommend stepwise planning and implementation:
13 – introduce concept of transition, office
– Age 12
12-13
policy
– Age 14-15– initiate jointly developed transition plan
– Age 16-17 – review and update plan, prepare for
actual transfer
– Age 18 – implement adult care model
• Designed mainly for primary care; may require
adjustments for chronic conditions, developmental issues
Assessing Readiness for
Transition In Patients with T1D
•
•
•
•
•
Initial assessments should begin between ages 12-14
Initially should focus on development of age appropriate self care
skills, balance of parental supervision/adolescent independence
As adolescent gets older, independence should increase; some back
and forth is normal
Adolescent may need re-education especially if initial education
was focused on parents
As patient approaches transfer of care, need to make sure patient is
developing competency in:
– Self-advocacy
– Independent health care behaviors
– Knowledge about diabetes
– Sexual/reproductive health
– Lifestyle (drugs, alcohol, driving)
Assessing Readiness, Continued
• National Diabetes Education Program (NDEP) Pediatric to
Adult Diabetes Care Transition Planning Checklist
– 2-page checklist format
– Prompts issues to discuss starting 1-2 years before
transfer of care to assure readiness
• Parents also need to be assessed
– Overly involved: need help allowing more independence
– Overly permissive: need reminding that teens still need
supervision
– Parents need to be prepared for confidentiality issues
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The Pediatric Provider
• Responsible for preparing patient and family
for transition
• Responsible for providing timely data
transfer to receiving adult physician
• Must also prepare for “letting go” of patient
Timing the Actual Transfer of Care
• Needs to be individualized for every patient
• Graduation from high school may NOT be the
best time for many patients
• Should probably not be delayed past college years
• 1 year after high school graduation seems to work
well for many
• May be dictated by insurance or geographic issues
• Actual transfer should occur at time of stable
control, not during acute illness
So Where do They Go?
•
•
•
Models in the literature:
– Adult provider in pediatric clinic
– Pediatric provider in adult clinic
– “Young adult” or transition clinics
In practice, most will transfer directly to an adult provider rather than a
specialized transition/young adult clinic
For T1D, pediatric care tends to be concentrated in centers; more options
once pt is adult
– Adult endocrinologist (either at same center or closer to home)
– Internist, Family practice, or Med-peds
– May be limited by locale, insurance
– Hybrid arrangements: seen at multidisciplinary diabetes center
periodically but managed by PCP in between
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What Happens When They Get There?
• Consider offering opportunity for “get-acquainted visit” to
adult site before first actual visit
• When the parents come too:
– Usually want to meet the new provider, often come to
first visit and then stop
– For patients >18, discuss whether and how much they
want parents involved
– For patients <18, discuss limits on confidentiality
– For cognitively impaired patients, verify
guardianship/other legal issues
Working with Adolescents, Continued
• Need to assess patient’s independence, ability to provide
diabetes self-care
• May need additional education – can’t always assume
patient “knows everything”
• Avoid making sweeping changes in regimen initially;
make incremental changes
• Start from where the adolescent is
• Use immediate or short-term consequences to motivate
– Brain is still developing into early 20’s
– Threat of long-term consequences is not motivating to
teens
Conclusions
• Transition is a process that begins early in
adolescence and continues into adulthood
• Pediatric
P di t i providers,
id
adult
d lt providers,
id
patients and families must work together to
promote independence of young persons
with diabetes
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Type 2 Diabetes in Youth
•
•
•
•
•
Increasing in parallel with obesity
Associated with minority ethnicity, lower socioeconomic status
Can be very difficult to manage:
– Lifestyle
challenging
Lif t l changes
h
h ll i iin this
thi population
l ti
– Frequently poor adherence, clinic attendance
– Newer medications for adults not yet approved in children
Emerging data suggest these patients are at high risk for
complications relatively early in adulthood, especially kidney
disease
Transition issues similar to type 1 except more likely to not follow
up/have insurance issues; most can be followed by primary care
providers familiar with type 2 diabetes
Diabetes Prevalence in Youth 2002–2005
•<10 years
•10–19 years
•Source: SEARCH for Diabetes in Youth Study
Diagnostic Criteria for Diabetes
Fasting Glucose (mg/dl)
2 hour Glucose on
OGTT (mg/dl)*
Diabetes**
≥ 126
≥ 200
Impaired Fasting Glucose
≥ 100 but less than 126
N/A
Impaired Glucose
Tolerance
N/A
≥140 but <200
*Standard glucose load of 75 g (1.75 g/kg up to max 75 for children)
**should be confirmed on separate day in absence of frank hyperglycemia
Random blood sugar of ≥200 with typical symptoms is diagnostic
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Diagnostic Criteria, Continued
• As of 2010, A1C can also be used
• A1C <5.7% normal; 5.7-6.4% pre-diabetes; 6.5%
or higher
hi h diabetes
di b t
• Must be normalized to DCCT standard
• Can miss early diabetes
• Repeat before making diagnosis in absence of
frank hyperglycemia
• Not clear if the above cutoffs truly apply to
children
Screening for Type 2 Diabetes in
Children
• Screening FPG recommended in patients who are
overweight (BMI > 85th%),
• AND have any 2 of the following risk factors: Family
history, Ethnicity, Signs of insulin resistance or related
conditions
• Start at 10 yrs or with onset of puberty
• Frequency: every 2 years
• Clinical judgment must be used in testing children who are
high risk but do not meet all criteria
• Insulin levels are not necessary or helpful
•ADA. Pediatrics, 2000;105:671
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