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A Primary Care Quality Improvement
Approach to Health Care Transition
Patience H. White, MD, MA; Margaret A. McManus, MHS; Jeanne W. McAllister, BSN, MS, MHA;
and W. Carl Cooley, MD
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© Shutterstock
n the US, 18% of all youth have a
special health care need. These needs
represent 80% of all health care expenditures for children.1,2 Most of these
youth will survive into adulthood as productive community members and will receive their health care in an adult model
of care. To reach that goal, transition
should be thought of as an active process
over time that addresses many aspects of
the youth’s life, including medical, psychosocial, educational, and vocational
needs, as they prepare to move from
child- to adult-centered health care.3
Transfer should be thought of as the act
of moving from one provider to another
or from one location to another.4, 5 Thus,
the transition process is twofold for
EDUCATIONAL OBJECTIVES
1. Learn about the new AAP/ ACP / AAFP clinical report and the
GotTransition Six Core Elements of Health Care Transition.
tor, Center for Medical Home Improvement, Concord, NH; and Chief Medical
2. Discuss the quality improvement approach to implementing
health care transition supports in practice settings including
lessons garnered from a learning collaborative.
Geisel School of Medicine at Dartmouth. Address correspondence to: Patience
3. Discover tools to start and support improvements in health
care transition.
Patience H. White, MD, MA, is Professor of Medicine and Pediatrics,
George Washington University School of Medicine and Health Sciences;
and Vice President, Public Health, Arthritis Foundation, Washington DC.
Margaret A. McManus, MHS, is President, The National Alliance to Advance Adolescent Health, Washington, DC. Jeanne W. McAllister, BSN,
MS, MHA, is Director, Center for Medical Home Improvement; and Adjunct
Assistant Professor of Psychiatry & Pediatrics Geisel School of Medicine at Dartmouth Crotched Mountain Foundation. W. Carl Cooley, MD, is Medical Direc-
Healio.com The new online home of PEDIATRIC ANNALS 41:5 | MAY 2012
Officer, Crotched Mountain Foundation; and Adjunct Professor of Pediatrics,
H. White, MD, via email: pwhite@arthritis.org.
Dr. White and Ms. McManus are co-principal investigators of Destination
Known: Making Health Care Transition Happen for Youth with Special Health
Care Needs in the District of Columbia, a grant funded by the District of Columbia Department of Health.
The authors appreciate the commitment to quality improvement from each
of the transition teams at Children’s National Medical Center’s Adolescent Clinic; Children’s Health Center at Adams Morgan; Georgetown Adolescent Clinic;
Howard’s Family Medicine Clinic; and George Washington’s Internal Medicine
Clinic. GotTransition — the National Health Care Transition Center is funded by
the cooperative agreement #U39MC18176 between the Crotched Mountain
Foundation and HRSA/USMCHB.
doi: 10.3928/00904481-20120426-e1-7
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youth with special health care needs:
first, taking on the responsibility of
managing one’s own health care from
parents/caregivers, and then preparing
to transfer to adult-centered care. Beginning in late childhood or early adolescence, the management of a chronic
illness begins to move from the primary responsibility of the parent to selfmanagement by the youth.6
By gradually shifting responsibility
for health-related tasks at a developmentally appropriate time, the youth
gains the knowledge, skills, and experience necessary to master the independence required to be successful
in the adult health care system (commensurate with their cognitive capacity). Unfortunately, the data suggest
that gaps in care during this transition
between the pediatric and adult health
care delivery systems are common
and result in poor health outcomes,
increased hospitalizations, and more
complications.7, 8
NATIONAL DATA ON TRANSITION
SUPPORT FOR YOUTH AND
FAMILIES
National data on transition reveal
that few youth with special health care
needs (SHCN) receive the services
they need from their health care providers to effectively transition from
pediatric to adult health care. Despite
the release of an earlier joint consensus statement on health care transition
in 20029 that articulated a series of recommendations for ensuring successful transition to adult-oriented health
care, little progress toward incorporating these recommendations into practice has occurred. Only 40% of youth
with SHCN are receiving needed support to effectively transition from pediatric to adult health care, according
to the 2009-2010 National Survey of
Children with Special Health Care
Needs.10
The survey demonstrates little
e2 | Healio.com/Pediatrics
change between time points; 4 years
earlier (in 2005-2006), 41% of youth
with SHCN met the transition core
outcome.11 These national data reveal
that most youth with SHCN have discussed with their health care providers taking increased responsibility for
Transition to adult care
has been recognized as an
important clinical issue by
many professional pediatric
and adult organizations.
self-care, but far fewer have discussed
transition to an adult health care provider. Those least likely to have received needed transition support are
those in low-income families, from racial/ethnic minority groups, and those
without a medical home.
PHYSICIAN TRANSITION
PERSPECTIVES
Transition to adult care has been recognized as an important clinical issue in
consensus statements and policy papers
from many professional pediatric and
adult organizations.12-15 In addition, during the past decade, many examples of
transition models for specific diseases
have evolved, but these are mostly confined to individual subspecialty transi-
tion clinics in pediatric settings.16, 17, 18
Despite the creation of national transition policies and sparsely distributed
transition clinics, widespread implementation of transition supports has not
occurred in the pediatric, family medicine, and internal medicine systems.19
Since 2002, a number of studies
have examined the barriers to transition from the perspectives of health
care providers. In a national study of
pediatricians,20 major gaps were revealed in the implementation of recommended transition activities. For
instance, few pediatric practices initiate planning for transition early in
adolescence; and most do not organize
their office systems or care processes
to make available educational materials, a transition plan, portable medical
summary, or referrals to adult physicians.
Pediatricians report numerous barriers that affect the transition support services they are able to provide, including
shortages of available adult providers,
lack of reimbursement and time for
transition services, lack of an identified
person responsible for transition planning, and little information about community support services.
Also important are difficulties in
breaking the bond that pediatricians have
with their patients and parents. From the
perspective of internists, similar and
different areas of concern about receiving youth with SHCN have been identified.21, 22 These include lack of training
on childhood chronic illness; lack of
information from and communication
with the pediatric provider about the
youth being transferred; reimbursement
concerns; lack of insurance continuity
among young adults; lack of staff training; and challenges in caring for some
young adults with SHCN when families
do not remain involved and guardianship
issues have not been addressed.
Both pediatric and adult health care
provider respondents sought explicit
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practice approaches and tools to help
them make the transition successful. Until now, relatively few attempts have been
made to implement comprehensive transition quality improvements in pediatric
and adult primary care settings consistent
with recommended medical practice.
QUALITY IMPROVEMENT
APPROACH TO TRANSITION
In 2011, the American Academy of
Pediatrics (AAP), American Academy
of Family Physicians (AAFP), and the
American College of Physicians (ACP)
seized the opportunity to translate the
original 2002 transition consensus
statement into practical operational
guidance for all youth, including those
with SHCN, as they move from pediatric to adult-oriented health care. An
expert writing group, including representatives from all of the primary care
professional societies, experts in transition and medical home, and youth
with SHCN and families, developed
the clinical report which went through
a thorough review process by multiple
primary and subspecialty stakeholders
in the AAP, ACP, and AAFP.23
The clinical report includes an algorithm that provides a logical framework
for transition support during adolescence and young adulthood. The algorithm starts with introducing the transition policy at the 12- to 13-year-old
visit, which accumulating data suggest
is an important developmental time to
introduce the transition process,24,25 and
it concludes when the youth is receiving health care in an adult model of care
and/or in an adult-focused health care
delivery system.
A core concept of the transition
process is having the youth understand
and experience an adult model of care
at the age of majority or 18 years of
age, even if they have not transferred
to an adult practice.
The experience of an adult model of
care in the pediatric setting gives youth
the opportunity to practice their skills
on how to manage their own health care
under the watchful guidance of their pediatric provider. These self-care skills
are required to navigate the adult health
care system and are learned in the transition preparation process in the pediatric
health care system.
The adult model of care acknowledges that youth, 18 years of age and
older, have primary responsibility for
their own health care. This represents
a major shift from a pediatric model
of care, in which the parent/caregiver
is in charge. Youth may authorize other individuals to be involved in their
health care after the age of 18 based on
HIPPA privacy rules. This means that
youth without cognitive challenges
should be seen alone without their parents unless they have authorized them
in writing to be present.
For those with cognitive challenges
who may need a level of guardianship,
clarifying their ability to manage their
own health care should be discussed
and the appropriate legal processes
completed before the youth turns 18
years of age. This legal information
should be included in the youth’s medical record at age 18 and then sent to
the adult health care provider before
the initial visit if the young adult is 18
years of age or older.
To translate the algorithm into a set
of tools for pediatric and adult practices, GotTransition, the federally
funded National Health Care Transition Center (NHCTC), developed a
change package called the Six Core
Elements of Health Care Transition.26
The six core elements include actions
for both adult and pediatric providers, as shown in Table 1 (see page e4).
For example, in the pediatric practice,
a transition policy, or approach that
includes an age when the youth will
experience an adult model of care,
should be developed for all providers
and staff to use, and in the adult prac-
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tice, a young adult privacy and consent policy should be developed.
Other core elements include a transitioning youth or young adult registry
of the patients the practice identifies
as having a high need for transition
services; transition preparation to assess and track self-care management
competencies; transition planning that
includes the development of a transition actionable care plan, a portable
medical summary, and, if needed, an
emergency care plan; transition and
transfer of care that incorporates all
of the up-to-date medical documents,
communication to the adult health
care provider; and transition completion that confirms that the youth/
young adult with SHCN has successfully completed the transfer to an adult
health care provider.
MEASURING PROGRESS
To measure progress on transition, the
NHCTC also developed a self-assessment tool for pediatric and adult practices that corresponds to the Six Core Elements. The Medical Home Health Care
Transition (HCT) Index was modeled
after the Center for Medical Home Improvement’s Medical Home Index27 and
allows practices to measure their own
progress toward better transition support
using four progressive levels for each of
six indicators with versions for pediatric
and adult settings.28
COLLABORATIVE MODEL
To bring the health care transition
(HCT) clinical report and the Six Core
Elements to life, The National Alliance to Advance Adolescent Health,
in partnership with the NHCTC, initiated the District of Columbia Learning
Collective (DC-LC) in 2010. The District of Columbia was the first among
a growing number of GotTransition
learning collaborative sites including,
Boston, Denver, and five sites in New
Hampshire to test and implement the
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Table 1. The Six Core Elements of Health Care Transition. GotTransition, the National Health Care Transition
Center of the Center for Medical Home Improvement at Crotched Mountain Foundation — funded through
a cooperative agreement (U39MC18176) US Maternal and Child Health Bureau, HRSA, DHHS.
Source: White PH et al. Reprinted with permission.
Six Core Elements of HCT. Distinct
about DC-LC has been the focus on
primary care practice as the first step
in the quality improvement (QI) process, the level of investment that the
District of Columbia Department of
Health has made to The National Alliance and the participating teams for
intensive training sessions, faculty and
content support from the NHCTC, and
ongoing coaching support to the practices from the authors.
The quality improvement methodology used in the DC-LC is based
on the “Breakthrough Series Learning
Collaborative,” widely used in implee4 | Healio.com/Pediatrics
menting the chronic care model and
medical home programs with welldocumented results.29 The Breakthrough Series is a learning approach
for health care teams interested in
making improvements in specific areas. It emphasizes interactive training
and requires focused work by each
team to adapt best practices to their
settings during a 12- to 24-month
learning period. Participants share and
learn from collective experiences and
challenges. Typically, there are three
in-person 1- to 3-day LC learning sessions between which action periods
are supported with monthly confer-
ence calls and consultation.
In the DC-LC, the five lead primary care practice teams include one
pediatric clinic, two adolescent clinics, one family medicine clinic, and
one internal medicine clinic all part of
academic health centers with training
programs. Each team includes a lead
physician, a care coordinator who is a
social worker, nurse, or trained parent
“navigator,” and a consumer who is
either a young adult with SHCN or a
parent whose teen has SHCN. In two
of the practices, residents participate,
as well. Leadership support has been
provided to each team by pediatric,
family medicine, and internal medicine department chairs.
The transitional learning objectives
for the DC-LC were developed collaboratively by the NHCTC and are based
on the Six Core Elements of HCT described earlier.30 A charter was developed for the HCT learning collaborative
with clear delineation of project goals,
measures, and participant and faculty
expectations. The goals for the learning
collaborative specified that each participating practice will: 1) develop/share a
written transition policy; 2) use a registry for tracking patients’ transition
progress; 3) test and improve the use of
transition tools (readiness assessments,
portable medical summaries, transition
action plan); and 4) define and implement the transition/transfer of care to
an adult model of care starting at age
18 (unless contraindicated by cognitive
disability or guardianship status).
The measures used are derived from
the newly developed pediatric and
adult medical home HCT index, also
consistent with the Six Core Elements.
At the learning collaborative level, the
charter calls for all of the participating
practices to demonstrate at least a 30%
improvement in the HCT index, and
all will have a written transition policy
accessible to patients and families and
familiar to all staff.
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At the individual practice level, the
charter calls for 1) at least two youth
or young adults to be entered into a
health care transition registry during
each month of the collaborative; 2) at
least two transition tools to be used in
the care of 90% of the youth or young
adults in the registry; 3) implementation of a defined adult model of care
documented for all youth in the registry that reach 18 years (except when
contraindicated); 4) explicit communication and timely transfer of summary information for all youth and
young adults in the registry who require transfer of care; and 5) periodic
short prospective surveys of youth and
families, increased levels of readiness
for and satisfaction with, the health
care transition process.
Faculty expectations were also
specified, including three face-to-face
learning sessions, monthly conference
calls and on-site assistance, communication via listserv, and provision of
relevant tools and resources. Each of
the lead physicians signed this charter
on behalf of their institution.
Before the start of the learning collaborative, all of the selected teams
participated in a pre-work phase,
which involved onsite meetings with
the lead physicians to provide background on health care transition —
specifically, the recommendations
from the transition clinical report, the
preliminary plans for the learning collaborative, expectations for participating teams, and organizational and
team readiness. The pre-work phase
also included a dinner with the lead
physicians from all five sites, providing time to get acquainted and to review the transition charter.
The learning sessions occurred every
4 months during an 18-month period.
During the learning sessions, faculty
reviewed the clinical report and recommended core elements; each of the teams
worked together and learned about each
SIDEBAR 1.
Georgetown Adolescent Clinic and Department
of Pediatrics Transition-of-Care Policy for
Youth and Young Adults
Georgetown Pediatrics is committed to helping all of our patients make a smooth transition from
pediatric to adult health care. This process requires working with our patients and their families
to plan and prepare for transition starting around the 14th birthday. At age 18 years, youth in our
practice will transition to an adult model of care with modifications as needed for youth with
intellectual disabilities. We honor the preferences of the youth and family regarding the eventual
transfer of care to an adult primary care medical home, but this tends to occur by 22 years of age.
Source: White PH et al. Reprinted with permission.
SIDEBAR 2.
George Washington Internal Medicine
Clinic Privacy Statement
The Medical Faculty Associates welcomes all youth and young adults including those with
chronic pediatric conditions and complex health care needs. We provide an adult model of
care for all of our patients 18 years and older with modifications as needed depending on the
patient’s intellectual ability and guardianship status. In order to make this a smooth transition,
we ask that all new young adult patients provide a portable medical summary or copies of their
medical records and in the case of patients with complex chronic conditions, a current care plan.
We will also make every effort to coordinate the transfer of care with our new patient’s prior
medical home, including direct communication with the pediatric medical home team, and assistance with the transfer of specialty care to adult specialists as needed.
Our approach to the care of young adults age 18 years and older meets HIPAA and state privacy
and consent requirements, making the young adult the sole decision-maker about care and about
the sharing of personal health information. This means that we do not discuss any aspect of your
care with anyone else unless you specifically ask that we do. We understand that many people
involve family and close friends in their health care decisions and would like their physician to
share information with those close to them. To allow others to be involved in your health care decisions requires legal authority through the signed consent of the young adult which we have in
clinic. For those who cannot provide consent, we would need legally valid custodial care or power
of attorney documentation, or an adjudicated guardianship arrangement.
Source: White PH et al. Reprinted with permission.
other’s strategies and challenges in piloting the six core elements into their practice processes so the lead physician was
not the only team member moving the
transition process forward.
The DC-LC also identified areas
where teams wanted more information (eg, guardianship, health information technology (HIT), consumer
involvement, and payment options).
These topics were covered during the
learning sessions or on the monthly
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conference call between the learning
sessions.
In between the learning sessions
was an action period in which change
ideas were tested in Plan-Do-StudyAct Cycles. Each team was encouraged to set aside time to implement
and test small incremental changes until they felt that they had identified the
most effective transition approach.30
As noted earlier, the teams were given
sample transition tools and were asked
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to customize the tools for their individual practice sites and vet them with
other health care providers, youth,
families, and administrative and legal
staff. See Sidebars 1 and 2 (see page
e5) for transition policy/privacy and
consent examples from two of the DCLC sites. To assess whether improvements in health care transitions were
taking place during the course of the
18-month learning collaborative, each
of the teams completed the HCT index
at the outset of the project, after 1 year,
and at the end. Marked improvements
were accomplished in all of the Six Core
Elements; the results of this collaborative will be published soon.
LESSONS LEARNED IN THE DC-LC
There are several early lessons learned
from implementing transition quality improvements in the DC-LC. Having the
involvement and leadership from all of
the pediatric/adolescent, family medicine, and internal medicine academic
programs in the District of Columbia was
incredibly important, and working with
lead physicians committed to this QI
project was essential. In addition, having
pediatric and adult practices participate
together built trust and understanding of
the distinct issues that the respective pediatric and adult practices face when supporting patient self-care management and
implementing a successful transfer.
It was also very helpful having readymade tools aligned with the new clinical
report, which practices could easily customize and utilize.
Starting with a defined population —
in the DC-LC case, the Medicaid-insured
youth with SHCN enrolled in a Medicaid managed care plan for children with
special needs (HSCSN) — provided
an important common population. Although each practice has expanded its
transition population to a broader group,
at the outset, it was helpful to start with
a clearly defined population and also to
collaborate with HSCSN around populae6 | Healio.com/Pediatrics
tion identification and care coordination.
Last but not least, a key lesson
learned is that finding adult physicians willing to be an active participant in the process is made much easier when they can expect new patients
will come with an up-to-date medical
summary, exposure to an adult model
Finding adult physicians
willing to be an active
participant in the process
is easier when…a referring
pediatric provider…makes
himself/herself available for
consultative support.
of care with some level of self-care
management skills, a one-page information sheet on the pediatric illness of
the youth being transferred, guardianship and/or alternatives for decisionmaking support having been clarified
before age 18 years, and when a referring pediatric provider communicates
to the adult health care provider and
makes himself/herself available for
consultative support, as needed.
Incorporating the Six Core Elements of Health Care Transition into
ongoing clinical processes has taken
longer and is more challenging than
anticipated, in part because these participating clinics are part of large academic institutions that have extensive
requirements to allow clinic process
changes such as posting a transition
policy in the clinic area. Another timerelated factor has been the relatively
recent introduction of electronic health
record systems within these sites.
Implementing QI was also more
challenging because so many older adolescents and young adults were “backed
up” in the pediatric system and had
little or no transition preparation. Starting with a mix of youth at various ages
(12-14 years, 15-18 years, 19+ years of
age) provides greater balance and demonstrates the value of early planning
and preparation. Another challenge was
having sufficient care coordination support to proactively reach out and deliver
recommended transition services.
Although a small portion of a care
manager’s time at each site has been
funded under this project, it is not sufficient; therefore, too much responsibility for transition QI falls to the
physician. Unfortunately, at the time
of this DC-LC, no public or private insurers in the District of Columbia provided financial incentives for medical
home nor support care coordination
functions in primary care settings. Incorporating transition into practices
recognized as medical homes would
clearly make the QI effort much simpler. Having transition supported
through the reimbursement system is
an essential ingredient to sustaining a
successful transition component to the
medical home. Thus, working to make
those financial changes is a crucial
part of creating a sustainable transition process for youth with SHCN.
CONCLUSION
Youth who have grown up with chronic
illnesses and disabilities now largely survive into adulthood seek to be an integral
part of their community and to live healthy,
productive adult lives. The QI methodology reviewed here can be utilized by all
pediatric, family medicine, and adult medical practices to optimize the transition for
youth/emerging adults and their families/
caregivers as they move from pediatric
health care to adult health care systems.
The careful planning, shared responsibility, and explicit roles of all involved
maximize the quality of care through this
transition process and the transfer from
pediatric to adult health care professionals.
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