Transitioning Youth with Special Needs to Adult Care
From The Child's Doctor, Spring 2010
- Parag K. Shah, MD
- Site Leader, LaRabida Children’s Hospital, Ann & Robert H. Lurie Children's Hospital of Chicago; Instructor in Pediatrics, Northwestern University Feinberg School of Medicine
- Disclosure: Dr. Shah has no industry relationships to disclose and does not refer to products that are still investigational or not labeled for the use in discussion.
Other Disclosure Information
At the conclusion of this activity, participants will be able to:
- Describe the challenges faced by youth with chronic conditions entering
adult systems of care
- Discuss the elements of a structured transition program
- Identify billing options for transition services
In the United States, there are currently 13 million children with special needs due to chronic conditions, such as congenital heart disease, cystic fibrosis, spina bifida, and others, and 90% of these children are expected to survive into adulthood.[1,2] Beyond the ability to survive, the potential for these children to thrive in adulthood has greatly increased as well. New laws and opportunities regarding employment, education, and independent living for medically complex youth have been instrumental in strengthening their ability to live with hope, pride, and dignity. Along with increases in survival and opportunities come the challenges of assuring that these youth are prepared to navigate an adult world not designed for youth with special needs. By implementing a structured transition program in their practice, pediatricians can help adolescents with chronic conditions acquire the necessary skills to manage the various aspects of their care in the adult healthcare systems.
Challenges of transition
Since the late 1980s, there has been an increasing awareness within the
medical community of the exponentially growing number of pediatric patients with
chronic illnesses who are surviving childhood and entering adulthood, as well as
the formidable challenges they face in doing so. In 1989, Surgeon General C.
Everett Koop convened a conference labeled “Growing Up and Getting Medical
Care,” where he first coined the term “transition,” and addressed the
deficiencies in the healthcare system for these youth as they enter adult
systems of care.
As children undergo the process of transitioning to adulthood, they deal with
multiple changes in their lives. As they mature, all children are faced with the
increased responsibilities required of adulthood, along with physical changes in
their bodies and a variety of social pressures. For youth with chronic medical
conditions, the responsibilities are greater, and the changes more complex.
One of the major challenges is the cultural change they encounter as they
move from pediatric to adult oriented systems of care. Pediatric healthcare
provides family-centered, comprehensive services, generally in a single
location, and allows parents to control decisions. In contrast, adult systems
provide individual, disease-centered care, leave the responsibility for
multidisciplinary management to patients, and assume patient independence in
medical decision making. Furthermore, these youth are often confronted with a
loss of insurance and limited access to services and providers. Given all these
changes, it is not surprising that many adolescents with chronic illnesses
transitioned to adult-centered care experience poor clinical outcomes, increased
loss to follow-up, increased hospitalizations, and increased morbidity.
To address these issues, numerous prominent medical associations and
disease-specific organizations have developed guidelines for pediatric medical
homes to help successfully “transition” pediatric patients into the adult
world.[5,6] Ensuring that youth receive successful transition services is also
one of the core outcomes the Maternal and Child Health Bureau listed in the
“Healthy People 2010” goals.
Creating a structured transition program
The American Academy of Pediatrics (AAP) has formally defined transition as
“the purposeful and planned movement of adolescents and young adults with
chronic conditions from child-centered to adult-centered care.” Current
thinking by leading societies and expert opinion revolve around creating a
structured transition program to ready young adults for adulthood and the adult
care medical setting. Surveys of adult providers and focus groups of
adolescents further support this approach.
A written transition plan should be developed that outlines how the child is
to be taught the skills necessary for managing his/her health as an independent
adult. The plan should also include discussions of goals regarding education,
employment, and independent living, and where the youth will obtain emergent
care. Using a transition checklist can help ensure that pediatricians address
all aspects of care, and completion of a checklist could entail “graduation”
from the transition program. (See a sample transition checklist in Table 1.)
It is important to understand that transition is a process that takes place
over time, and is not just the event of transferring medical care.
Transitioning will happen regardless of whether a plan exists or not. A
successful transition, however, is measured by how the youth fares in adulthood,
medically, financially, and socially. The following elements are recommended for
all structured transition programs for youths with special needs
Start early: Pediatricians should begin to discuss
transitioning with patients and families at an earlier age than is commonly
believed. Current expert opinions suggest starting transition discussions around
age 11 and having a transition care plan by age 14.[5,14] This sets the stage
for a collective partnership between the provider, parents, and child to work on
the child’s preparation for adult care.
Support new pediatrician/parent/patient dynamics: The
changing roles and dynamics between the pediatrician, parent, and patient need
to be acknowledged. The pediatrician and parent should gradually move from a
director to a consultant role, while the patient should move from recipient to
participant to manager role. Pediatricians should begin giving patients new
developmentally appropriate responsibilities, such as presenting their own
concerns, in the early teenage years.
Educate patients on managing health needs: Pediatricians
should help adolescents with chronic conditions learn about their disease and
related medications, including the purpose, side effects, and dosage.
Furthermore, youth should be taught the necessary skills to manage their
healthcare needs, including how to refill prescriptions, make appointments,
present themselves to providers, and access chronic and acute medical care.
Create portable medical record summary: This has been cited
by adult providers as one of the most desirable components of transition, and
yet is very seldom done by pediatric providers. A portable medical summary
should be short and succinct, electronic, and easily updatable. Since families
obtain care at various places, the summary should ideally be accessible to the
patient. Examples of such summaries and assistance in creating them are
available at online sites, including Google Health (www.google.com/health) and
Healthy and Ready to Work (www.hrtw.org). A good portable medical summary should
contain an active problem list, important historical problems, current
medications and significant past medications, devices and equipment needed, care
providers for chronic conditions, plans for emergency care, and information
about the patient’s functional limitations. Many families may not have the means
or ability to maintain such a record, however. In these cases, an attempt can be
made to provide a family with something they can take to other providers, such
as information on a flash drive. At the least, the primary provider can maintain
a record summary at the office to be used for any transfer of care that may
arise, including transition to adult providers.
Discuss general adolescent issues: Discussion should also
occur not only around health issues, but general adolescent issues including
sexuality, risk-taking behaviors, substance usage, mental health and depression,
sleep hygiene, plans for future education or work, management of finances,
consent and confidentiality issues. These are all areas where the young adult
will be challenged with increased responsibility and may need guidance and
support in developing a plan.
Address health insurance coverage: This remains one of the
biggest challenges for young adults. The rate of uninsurance among young adults
aged 19-29 is 29%, well above the rate for the rest of the nation, and youth
with more severe disabilities may have higher rates than this. Health
insurance and disability benefits remain complex and often state driven.
Consultation from a social worker or other benefit specialist can be crucial.
Public insurance is available for young adults who meet disability and income
criteria (less than $928 per month in 2009). The Health Benefits for Workers
with Disabilities program further expands the amount that disabled adults can
earn and still qualify for public medical insurance plans. Families with private
insurance should contact their insurance company. Many children who remain
dependent and are disabled are eligible to remain on parental benefit plans for
life. With healthcare reform law, all dependent young adults can remain on
parental insurance plans through age 26, effective with plan years beginning
September 2010 and after.
Plan prior meetings with adult providers: If possible, plans
to meet the adult providers before the transfer of care occurs can ease and
facilitate the transition. Pediatricians or subspecialty providers in tertiary
centers can help facilitate this by conducting joint clinics between the
pediatric and adult specialty centers, having someone from the pediatric staff
go with patients to their first appointments with adult providers, or creating a
video introduction to the adult facility that can be viewed from the pediatric
office. Pediatricians in the community may not be in a position to offer these
services, but may be able to continue to provide care as the young adult starts
meeting with adult providers until the patient is comfortable with the new
physician, emphasizing again that transition is a process, not an event. Also,
pediatricians should discuss and introduce the adult emergency care system, as
this may be one of the scariest elements of healthcare for the young adult
Billing for transition services
Currently, less than one-third of pediatricians report providing many of
these transition services. Lack of time and reimbursement for transition
services remains a significant barrier to providing care. Billing options, while
limited, do exist. Services provided by physicians or advanced practice nurses
(APNs) may be billed using standard evaluation and management (E/M) codes
(99201-215) or consultation codes (99241-245). Each code is associated with a
typical time. Time criteria can be applied to determine the appropriate E/M
level for the visit when counseling represents greater than 50% of the
face-to-face time for the visit (which is common when providing transition
services). Furthermore, if a consultation is done as part of the visit resulting
in a long visit, prolonged services codes can be employed (99354-99355). These
service codes can be used if the physician spends 30 minutes beyond the time
listed for the highest E/M code in that category (99205, 99215, 99245). The key
aspect to billing these services is to document the specific counseling
delivered and the exact time in the note. Other codes to consider are care plan
development and oversight (99339-99340), team conference (99366, 99368), group
counseling visits (99411-99412), and prevention and education counseling
As more and more youth with complex chronic conditions survive into
adulthood, it becomes the responsibility of the healthcare system to fully
prepare these youth for the adult world. Young adults not prepared are more
likely to have poor health outcomes. A structured transition program may help
improve these outcomes. Such a program should involve creation of a portable
medical summary, development of skills necessary to independently care for one’s
own health, as well as discussions around high risk behaviors, consent and
confidentiality, employment, educational, and financial planning, and
procurement of health insurance. By providing these transition services
according to a structured plan, pediatricians can significantly help their
patients with special needs thrive in adulthood.
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