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Transition of Diabetes Care from Pediatrics to Adulthood
By Sobha Kollipara, MD and Francine R. Kaufman, MD
Print version (PDF* 142k)
Introduction
Adolescence is a stage of life filled with
unfamiliar experiences. It is also the
stage when youth separate from their
parents and acts of rebellion and coping
problems often emerge. The young person
is striving to become an adult and
learn the intricacies of adulthood. Having
diabetes at this age adds to the challenges.
In addition to diabetes self-care
transition, other life events complicate
the move into adulthood, such as high
school graduation, employment, relationships,
independence, and moving
away from the security of home. These
adolescents need proper direction and
support by various groups of people to
effect a successful transition. Traditionally,
healthcare professionals and parents
provide this support. School nurses can
play a significant role in helping adolescents
prepare for transition during their
school interactions.
Adolescence and Diabetes Care Transition
During adolescence, diabetes control is
often suboptimal. This is due to both
physiological and psychological factors.
From a physiological standpoint,
adolescence is associated with insulin
resistance due to the dramatic change
in growth hormone secretory dynamics.
Insulin resistance causes blood glucose
levels and insulin requirements to
increase (Amiel et al., 1986; Dunger,
1992). From a psychological perspective,
youth want to assume self-care, but
they often fall short without adequate
parental supervision. This means that
the period of transition to adulthood
is more challenging for the adolescent
with diabetes. Adding even more to the
challenge is the fact that youth who have
had diabetes for more than a decade are
at the stage when diabetes complications
begin to develop, particularly if their diabetes
has been poorly managed. How
this transition period is handled, therefore,
is critical for short- and long-term
physical and mental health. At times,
moving to adult care with increased
self-care responsibility can be the medical
equivalent of high-risk behavior for
some adolescents. In our own clinical
experience, some adolescents who have
transitioned to adult care are naïve
about potential diabetes complications
and do not adhere to medical recommendations.
Others seek medical care
only for acute crisis interventions and
consequently do not establish a strong
bond with adult care providers.
While an optimal transition care plan
might be considered essential, existing
data suggest that in most cases a prearranged
plan has not been put in place
(Flemming et al., 2002). The International
Society for Pediatric and Adolescent
Diabetes (ISPAD, 2002) states in
their guidelines for adolescent diabetes
care: “Although the majority of adolescents
adapt well to the difficult challenges
of puberty, it must be recognized
that their health care and emotional
needs are distinctly different from those
of younger children or older adults.”
Existing Strategies
The traditional model
In the traditional model, the transition of
responsibility for diabetes care from the
parent to the adolescent/young adult is
abrupt. Often the youth who relies on his
or her parents for advice on how much
insulin to take and when to take it, securing
medications and supplies, and for
making diabetes-related appointments
is abruptly given responsibility for these
diabetes tasks when he or she leaves home
and/or graduates from high school. This
young adult goes from being told what to
do, to having to figure it out alone. The
shift from dependence to independence
is often confusing and something for
which the young adult may not be prepared
or emotionally ready to accept. At
the same time, diabetes care providers are
changed — instead of a pediatrician and
a pediatrics-focused diabetes team, the
young adult is under the care of an internist
or family medicine team. Insurance
coverage is often changed or lost as the
young adult is no longer covered by his
or her parents or a state entitlement program
designed for children. The whole
approach to diabetes care changes and
focuses on the individual (Bryden et al.,
2001; Howard et al., 2001), who may not
be adequately prepared for self-management
or independence.
Newer strategies
Many centers and clinics are designing
plans to provide an optimal transition for
young adults. Information from surveys
and follow-up of young people in adult
care shows that important consideration
needs to be given to many factors that
affect successful transition (Busse et al.,
2004; Kipps et al., 2002; Visentin et al.,
2006). The following are some of the approaches
used.
- Establish young adult clinics with
joint coverage by both pediatric and
adult providers.
- Introduce adult care providers to
adolescents while they are still under
pediatric care, to promote a comfort
level for the patient and family.
- Prepare adolescents. Tell them
what the process of transition will
be, with a time line, well ahead of the actual transfer. Preparation is
the key to success.
- Involve nurses in follow-up of new
young patients in the adult clinic.
- Use the age of 17 to 18 only as a
guide and not a standard. Consider
the patient’s psychological and social
maturity as a guide for readiness.
- Consider coinciding transition with
high school or college.
Diabetes transition and school nurses
School nurses provide a vital role in
health care of adolescents before they
graduate from high school. School
nurses oversee day-to-day health maintenance
of students while at school,
support students with diabetes, and
provide health and wellness education.
Although the role of school nurses has
never been studied in models of successful
transition, intuition strongly
suggests incorporating school nurses
into the diabetes-care transition. Reinforcement
of good diabetes self-care
and independence during the high
school years will help build the adolescent’s
knowledge and confidence.
Outcomes of some transition models
The difficulties with transition are not
unique to any specific country, but global.
Currently there are follow-up survey data
from some young adults in different countries
at various medical facilities (clinics,
medical centers, and hospitals) (Bryden et
al., 2001; Busse et al., 2007; Kipps et al.,
2002; Visentin et al., 2006), some with
adequate transition plans and others without.
The results indicate that:
- After transition there is a decline in
clinic attendance,
- Many young adults repeatedly change
their adult healthcare providers,
- There is an increase in A1C and diabetes
morbidity in some centers,
- There is higher attendance if the
adolescent met the adult team prior
to transition.
An appropriate target age for transition
appears to be 18 to 20 years. There are
more positive results when there is effective
collaboration between the pediatric and
adult clinics, and when a formal pretransition
education program is in place.
Challenges and Barriers to an Effective Transition
As adolescents become young adults
they often “drop out” of medical care.
It appears that for some, the healthcare
system is not equipped to provide
the kind of diabetes care that fits their
needs. Hence, many people in this age
range become the “forgotten group.”
This is aggravated by the fact that obtaining
health insurance is often difficult
for young adults. Following are
some issues that affect the interactions
of adult care providers and young adults
and negatively impact the effective delivery
of diabetes care.
Challenges for the adult care providers:
- Many care providers may have a poor
understanding of the adolescent’s
emotional and psychological needs
and abilities.
- There is often inadequate interaction
and follow-up between the care provider
and the young adult.
- Providers of adult care may not understand
the issues that lead to nonadherence
to diabetes care needs in
young people, such as time and financial
constraints and school and
work issues.
- The transfer of medical record information
from the pediatrician to the
adult care giver is often inadequate.
Challenges for the young adult:
- Social distractions, such as employment,
higher education, and
relationships;
- Emotional barriers – fear of leaving
home, loss of parental support, and
loss of security;
- Lifestyle factors and inability to adjust
to the demands of diabetes management
and social pressures;
- Lack of familiarity with and confidence
in the adult care provider;
- Conflict between greater autonomy
and dependence;
- Lack of adequate knowledge for optimal
diabetes self care.
Recommendations
1. ISPAD’s guidelines for optimal transition
are (ISPAD, 2002):
- Include negotiation and liaison between
pediatric and adult services
and, when possible, organize the
clinics jointly.
- Decide on the optimal age and stage
of development for transition to joint
care or transfer to adult care based on
local services and agreements.
- Prepare the adolescent for transfer in
advance.
- Ensure that there is no hiatus in
care at the time of transfer and that
the young person is not lost to follow-up care.
Recommendations from others:
- Transition should be gradual and
organized.
- Transition should occur when the
health of the adolescent is stable and after
independent health care and diabetes
self-care behaviors are understood.
- There should be sensitivity to the
emotional maturity and coping abilities
of the adolescent.
- Psychosocial support may be necessary.
- A team approach helps the successful
transition to young adult.
- If possible, there should be joint
clinics and a coordinator at the
adult clinic.
Strategies for School Nurses:
During high school years, the school
nurse should stress the need for independence
as students reach the transition
period. To encourage adolescent
independence in diabetes care, the
school nurse could:
- Observe and help the student to make
independent decisions about diabetes
care at school;
- Encourage the student to follow
healthy behaviors and avoid high-risk
behaviors;
- Help the student cope with social
and peer pressures that interfere with
diabetes care at school;
- Recognize the need and refer to:
- appropriate healthcare professionals if
diabetes management is suboptimal,
- psychosocial professionals and
resources if coping skills are inadequate;
- Reinforce good habits for improvement
in diabetes control;
- Help parents to shift the responsibility
to the student.
Summary
Transition to adulthood for young people
with diabetes is a critical milestone
in their lives. It is a time when many
facets of life are changing simultaneously.
It is most important to recognize
the special needs of adolescents with diabetes
during this period. A successful
and smooth transition of diabetes care
should be based on a well-organized
plan that includes the young person
and the family. The process should be
facilitated by collaboration between the
pediatric and adult clinics. It should be
guided by structured policies and guidelines,
including posttransition evaluation.
Finally, it should be a process, not
an event. The school nurse can play a
critical role in its success.
REFERENCES:
Amiel, S. et al. (1986). Impaired insulin action in puberty:
a contributing factor to poor glycemic control in
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Bryden, K. et al. (2001). Clinical and psychological
course of diabetes from adolescence to young adulthood:
a longitudinal cohort study. Diabetes Care,
24(9), 1536-1540.
Busse, F.P. et al. (2007). Evaluation of patient’s opinion
and metabolic control after transfer of young adults
with type 1 diabetes from a pediatric diabetes clinic to
adult care. Horm Res, 67, 132-138.
Cooke, E. (2007). Transitional Care for young people
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Dunger, D.B. (1992). Daibetes in Puberty. Arch Dis
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Flemming, E. et al. (2002). The transition of adolescents
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Howard, A. et al. (2001). Young adults with diabetes.
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ISPAD Consensus Guidelines for the Management of
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2002. www.ispad.org
Kipps, S. et al. (2002). Current methods of transfer of
young people with Type 1 diabetes to adult services.
Diabetes UK – Diabetes Medicine, 19, 649-654.
McGill, M. (2002). How do we organize smooth, effective
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57(1), 66-68.
Vanelli, M. et al. (2004). Effectiveness of an uninterrupted
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Visentin, K. et al. (2006). Adolescents with Type 1
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ABOUT THE AUTHOR
Sobha Kollipara, MD, FAAP is the Director, Pediatric
Endocrinology and Diabetes, at Kaiser Permanente
Medical Center, in Sacramento, CA. Dr. Kollipara is also
a member of the National Diabetes Education Program’s
Diabetes in Children and Adolescents Work Group.
Francine R. Kaufman, MD is a Professor of Pediatrics
at the Keck School of Medicine, USC; Head, the
Center for Diabetes, Endocrinology and Metabolism,
Children’s Hospital in Los Angeles. She is also a member
of the National Diabetes Education Program’s Diabetes
in Children and Adolescents Work Group.
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