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Current Status of Transition Preparation Among Youth
With Special Needs in the United States
WHAT’S KNOWN ON THIS SUBJECT: The importance of transition
from pediatric to adult health care for youth with special health
care needs has gained increasing attention over the past decade,
but fewer than half of this population received needed transition
preparation in 2005–2006.
WHAT THIS STUDY ADDS: This study reports on transition findings
from the 2009–2010 National Survey of Children with Special Health
Care Needs and finds no discernible improvements since 2005–
2006. New clinical recommendations and care processes should
help to accelerate transition improvements in the future.
abstract
OBJECTIVE: To examine current US performance on transition from
pediatric to adult health care and discuss strategies for improvement.
METHODS: The 2009–2010 National Survey of Children with Special
Health Care Needs is a nationally representative sample with 17 114
parent respondents who have youth with special health care needs
(YSHCN) ages 12 and 18. They are asked about transition to an adult
provider, changing health care needs, increasing responsibility for
health care needs, and maintaining insurance coverage. We analyzed
the association of selected characteristics with successful transition
preparation.
RESULTS: Overall, 40% of YSHCN meet the national transition core out-
come. Several factors are associated with transition preparation, includ-
ing female gender; younger age; white race; non-Hispanic ethnicity;income
$400% of poverty; little or no impact of condition on activities; having
a condition other than an emotional, behavioral, or developmental
condition; having a medical home; and being privately insured.
CONCLUSIONS: Most YSHCN are not receiving needed transition prepa-
ration. Although most providers are encouraging YSHCN to assume re-
sponsibility for their own health, far fewer are discussing transfer to an
adult provider and insurance continuity. Although changes in sample de-
sign limit trend analysis, there have been no discernible improvements
since this transition outcome was measured in the 2005–2006 National
Survey of Children with Special Health Care Needs. The 2011 release of
the American Academy of Pediatrics/American Academy of Family
Physicians/American College of Physicians clinical recommendations
on transition, new transition tools, and the spread of medical home
should stimulate future improvements in transition performance.
Pediatrics 2013;131:1090–1097
AUTHORS: Margaret A. McManus, MHS,
a
Lauren R.
Pollack,
a
W. Carl Cooley, MD,
b
Jeanne W. McAllister, BSN,
MS, MHA,
b
Debra Lotstein, MD, MPH,
c
Bonnie Strickland,
PhD,
d
and Marie Y. Mann, MD, MPH
d
a
The National Alliance to Advance Adolescent Health, Washington,
DC;
b
The National Health Care Trans ition C enter, Con cord,
New Hampshire;
c
The David Geffen School of Medicine at
University of California, Los Angeles, Los Angeles, California;
and
d
Maternal and Child Health Bureau, Health Resources
and Services Administration, Rockville, Maryland
KEY WORDS
adolescent, pediatric transition to adult care, special health care
needs, children with disabilities, primary health care, patient-
centered care, self-management
ABBREVIATIONS
ACA—Patient Protection and Affordable Care Act
CI—confidence interval
FPL—federal poverty level
HRSA—Health Resources and Services Administration
MCHB—Maternal and Child Health Bureau
NS-CSHCN—National Survey of Children with Special Health Care
Needs
OR—odds ratio
YSHCN—youth with special health care needs
Ms McManus conceptualized and interpreted the data analysis,
and drafted the background, discussion, and conclusion
sections for the initial manuscript; Ms Pollack carried out all of
the data analyses, and drafted the methods and results section
for the initial manuscript; Dr Cooley and Ms McAllister
participated in the development of the discussion section and
critically reviewed the initial manuscript; Dr Lotstein assisted in
the conceptualization and interpretation of the data analysis
and the examination of trends, and critically reviewed the initial
manuscript; Drs Strickland and Mann assisted in the
development of the background and discussion sections and
critically reviewed the manuscript; and all authors approved the
final manuscript as submitted.
www.pediatrics.org/cgi/doi/10.1542/peds.2012-3050
doi:10.1542/peds.2012-3050
Accepted for publication Mar 6, 2013
Address correspondence to Margaret McManus, MHS, The National
Alliance to Advance Adolescent Health, 750 17th St, NW, Ste 1100,
Washington DC 20006. E-mail: mmcmanus@thenationalalliance.org
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
Copyright © 2013 by the American Academy of Pediatrics
FINANCIAL DISCLOSURE: The authors have indicated they have
no financial relationships relevant to this article to disclose.
FUNDING: Supported by the National Health Care Transition
Center through the cooperative agreement U39MC18176 HRSA/
MCHB.
1090 MCMANUS et al by guest on December 31, 2015Downloaded from
The importance of transition planning
has received increasing attention over
the past several years. The Patient
Protection and Affordable Care Act
(ACA) recognized transition as an es-
sential health home service.
1
The Na-
tional Committee on Quality Assurance,
in its 2011 Patient-Centered Medical
Home Standards, included a specific
requirement to address care tran-
sitions for improving primary care.
2
Also in 2011, the American Academy of
Pediatrics, the American Academy of
Family Physicians, and the American
College of Physicians published a clini-
cal report on practice-based imple-
mentation of transition for youth
beginning in early adolescence.
3
Most
recently, Healthy People 2020 in-
corporated a new public health goal on
transition planning from pediatric to
adult health care.
4
For more tha n a decade, the De partment
of Health and Human Services’Maternal
and Child Health Bureau (MCHB) has
articulated transition as 1 of 6 core
performance outcomes necessary to
create a comprehensive system of
services for all children with special
health care needs. This core outcome
specifies that youth with special health
care needs (YSHCN) should receive the
services necessary to make transitions
to all aspects of adult life, including
adult health care, work, and independ-
ence.
5
To monitor national and state
performance on transition and other
core outcomes, beginning in 2001, MCHB
has partnered every 4 to 5 years with
the National Center for Health Statistics
to conduct the National Survey of Chil-
dren with Special Health Care Needs
(NS-CSHCN).
6,7
In this article, we report on the tran-
sition results from the 2009–2010 NS-
CSHCN. We examine population, condi-
tion, and health care characteristics
associated with successful transition
preparation. Finally, we discuss strat-
egies to overcome these obstacles.
METHODS
The NS-CSHCN is designed and funded by
MCHB and conducted by the Centers for
Disease Control and Prevention’sNa-
tional Center for Health Statistics. The
questionnaire items in the 2009–2010
NS-CSHCN were the same as those used
in the previous NS-CSHCN conducted in
2005–2006.
8
Independent random sam-
ples of US households were identified
through a random-digit dial telephone
survey and subsequently screened to
include parents or legal guardians with
children ,18 years of age. To identify
parents/guardians who have a child
with special health care needs, a 5-item
screener was administered.
9
For the
first time, the 2009–2010 NS-CSHCN in-
cluded an additional random-digit dial
sample of cell phone users. A total of 17
114 interviews were completed for
YSHCN between the ages of 12 and 18
years. Data were collected between July
7, 2009, and March 2, 2011.
Measures
The transition core outcome is a com-
posite measure calculated by using
responses to 4 component measuresand
their follow-up questions (Table 1). These
measures examine whether the follow-
ing topics have been discussed: (1)
transition to an adult provider, (2)
changing health care needs, (3) main-
taining health insurance coverage, and
(4) taking increased responsibility for
self-care. The first component measure
is asked only of respondents who report
that their child sees a pediatrician for
care. Three of the 4 component meas-
ures contain a follow-up question asked
of respondents who reported that a dis-
cussion on the topic did not occur. This
follow-up question assesses whether
a discussion on this topic would have
been helpful. To successfully meet the
overall transition core outcome, the re-
spondent must report that each of the
first 3 discussions either took place or
that a discussion on the topic would not
have been helpful and that the child’s
doctor “always”or “usually”encourages
the child to take increased responsibility
for his or her health care needs. For
analysis of individual component meas-
ures, those who reported that a discus-
sion would not have been helpful were
TABLE 1 The 2009/2010 NS-CSHCN Transition Core Outcome: Constructions and Questions
Constructs Questions
The child receives anticipatory
guidance in the transition to
adulthood
Doctors have discussed shift to
adult provider, if necessary
Have they (your child’s doctors or other health care providers)
talked with you about having (child) eventually see doctors or
other health care providers who treat adults? (only asked if
any of child’s doctors or other providers treat only children)
(yes/no) (if no) Would a discussion about doctors who treat
adults have been helpful to you?
Doctors have discussed future
health care needs, if necessary
Have (child’s) doctors or other health care providers talked with
you or (your child) about his or her health care needs as he or
she becomes an adult? (yes/no) (if no) Would a discussion
about (child’s) health care needs have been helpful?
Doctors have discussed future
insurance needs, if necessary
Eligibility for health insurance often changes as children reach
adulthood. Has anyone discussed with you how to obtain or
keep some type of health insurance coverage as (child)
becomes an adult? (yes/no) (if no) Would a discussion about
health insurance have been helpful to you?
Caretakers report that the child has
usually or always been encouraged
to take responsibility for his or her
health care needs
How often do (child’s) doctors or other health care providers
encourage (him or her) to take responsibility for (his or her)
health care needs, such as taking medication, understanding
(his or her) health, or following medical advice? (never
sometimes, usually, always)
ARTICLE
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not included in the results for that
measure. Nine variables of interest were
assessed for association with success-
ful transition preparation: gender; age;
household language; race/ethnicity;
poverty; impact on activities; presence
of an emotional, behavioral, or de-
velopmental condition; access to a med-
ical home; and source of insurance
coverage. These variables are consistent
with those used in previous analyses of
the survey.
6,7
Data Analysis
Descriptive statistics were calculated to
examine the characteristics of YSHCN as
well as the proportion meeting the
transition core outcome and each
component measure at the national
level. To assess receipt of transition
preparation independent of perceived
need, we also analyzed the transition
core outcome without the follow-up
questions that asked whether the
parent/guardian felt that transition
services would have been helpful. All
analyses incorporated the complex
sample design, and multiply imputed
data wereused to examine poverty, race,
and primary household language. The
association between key sociodemo-
graphic factors and individual compo-
nent measures and the transition core
outcomewas examined by using x
2
tests
of independence. An adjusted logistic
regression analysis was performed to
identify factors associated with not
meeting the transition outcome and
each component measure. For the ad-
justed logistic regression analysis, the
outcome was defined as not meeting the
transition outcome to maintain consis-
tency with the previous publication an-
alyzing the 2005–2006 data set.
7
All
analyses were conducted by using Stata
12.0 (Stata Corp, College Station, TX).
RESULTS
An estimated 4.5 million or 18.4% of US
youth ages 12 to 18 have a special health
care need, a prevalence rate that is
double that of young children ages 0 to
5.
10
Health and health care character-
istics that distinguish YSHCN pertain to
their type of chronic condition, level of
disability, access to a medical home,
and source of insurance coverage.
More than a third of YSHCN have an
emotional, behavioral, or developmen-
tal condition, and more than a quarter
experience a persistent and significant
impact on activities as a result of their
condition. Fewer than half of YSHCN
receive care that can be described as
a medical home.
11
The vast majority of
YSHCN are insured: more than half with
private insurance, about a third with
public insurance, and the remainder
with both public and private coverage
(Table 2).
Overall, 40% of YSHCN meet the national
transition outcome (Table 3). The pro-
portion of YSHCN meeting individual
component measures differs sub-
stantially: 44% discuss switching to an
adult provider with their health care
provider, 59% discuss changing health
care needs, 78% discuss taking in-
creased responsibility for self-care,
and 35% discuss maintaining health
insurance coverage. When the follow-up
questions about whether a discussion
TABLE 2 Prevalence and Characteristics of YSHCN Ages 12 to 18 Years: United States, 2009–2010
(n= 17 114)
Weighted n%
Gender
Male 2 527 674 56.3
Female 1 963 928 43.7
Age, y
12–14 2 225 741 49.4
15–17 2 275 943 50.6
Race/Ethnicity
Non-Hispanic white 2 923 064 64.9
Non-Hispanic black 632 194 14.0
Hispanic 630 937 14.0
All other
a
315 488 7.0
Primary language in home
English 4 255 265 94.5
Not English 246 419 5.5
Poverty status
,100% FPL
b
885 228 19.7
100%–199% FPL 950 645 21.1
200%–399% FPL 1 300 985 28.9
$400% FPL 1 364 827 30.3
Impact on activities
Always/usually/a great deal affected 1 214 553 27.0
Somewhat/moderately affected 1 719 241 38.3
Never affected 1 559 768 34.7
Emotional, behavioral, or developmental conditions
Yes 1 608 514 35.7
No 2 893 170 64.3
Medical Home
Yes
c
1 861 041 43.1
No 2 455 396 56.9
Type of insurance
Private 2 461 732 56.6
Public 1 396 003 32.1
Both private and public 314 800 7.2
Uninsured 179 853 4.1
a
All other includes respondents identified as Asian, Alaska Native, American Indian, Native Hawaiian, Pacific Islander, or
Mixed Race.
b
Based on the US Department of Health and Human Services pover ty guidelines. For most households surveyed in 2009 and
2010, 100% of the poverty level was defined as $22 050 for a family of 4.
c
Meets MCHB criteria for a medical home.
1092 MCMANUS et al by guest on December 31, 2015Downloaded from
on a particular topic would have been
helpful were excluded, only 21% of re-
spondents report that their child had
a discussion about transition to an adult
provider, 44% report that their child
had a discussion about changing health
care needs, and 23% report that their
child had a discussion about maintain-
ing insurance (data not shown). These
findings indicate a much smaller pro-
portion of respondents who report that
a discussion took place regardless of
whether they felt it would have been
helpful.
Several sociodemographic factors are as-
sociated with meeting the core transition
outcome: female gender, non-Hispanic
white race, speaking English in the
home, and having a family income
$400% of the federal poverty level
(FPL). In addition, certain health and
health care characteristics positively
affect transition preparation. These
include having a special health care
TABLE 3 Proportion of YSHCN, Ages 12 to 18, Meeting the Transition Core Outcome and Individual Component Measures, According to Selected
Sociodemographic Factors: United States, 2009–2010
Doctor or Other
Health Care Provider
Discussed Shift
to Adult Provider
When Needed
(n= 4606)
Doctor or Other
HealthCare Provider
Discussed Adult
Health Care Needs
When Needed
(n= 12 359)
Anyone Discussed
Health Insurance
When Needed
(n= 10 413)
Doctor or Other
HealthCareProvider
Usually/Always
Encourages Youth to
Take Responsibility
When Needed
(n= 17 050)
Overall Core
Outcome: Youth
Receives Services
Necessary to Make
Transition to Adult
Life (n= 16 222)
% (SE) P
a
% (SE) P
a
% (SE) P% (SE) P% (SE) P
Total 43.9 (1.4) 59.0 (0.8) 35.0 (0.9) 78.0 (0.6) 40.0 (0.7)
Gender
Male 41.7 (1.8) .001 55.2 (1.1) .000 32.9 (1.1) .000 76.0 (0.8) .000 37.1 (0.9) .000
Female 47.1 (2.1) 63.7 (1.3) 37.7 (1.4) 80.6 (0.9) 43.8 (1.1)
Age, y
12–14 36.3 (2.0) .000 57.3 (1.2) .032 32.1 (1.3) .000 76.0 (0.9) .000 40.7 (1.0) .358
15–17 49.6 (1.8) 60.5 (1.1) 37.5 (1.2) 79.9 (0.8) 39.4 (1.0)
Race/Ethnicity
Non-Hispanic white 48.1 (1.6) .535 62.7 (0.9) .075 37.3 (1.0) .083 79.9 (0.7) .001 45.6 (0.8) .034
Non-Hispanic black 35.8 (3.2) 51.4 (2.3) 35.4 (2.3) 72.3 (1.8) 28.2 (1.8)
Hispanic 33.7 (3.7) 51.0 (2.8) 26.4 (2.5) 75.0 (2.1) 25.3 (2.1)
All other
b
56.2 (4.7) 61.5 (2.8) 36.1 (3.3) 77.9 (1.9) 40.3 (2.8)
Primary language in home
English 45.0 (1.4) .012 60.4 (0.8) .000 35.9 (0.9) .000 78.5 (0.6) .000 41.3 (0.7) .000
Not English 30.3 (6.1) 40.1 (4.5) 23.6 (4.3) 69.8 (3.8) 17.1 (3.4)
Poverty status
,100% FPL
c
35.5 (2.9) .000 52.8 (1.9) .000 29.0 (1.9) .000 71.4 (1.5) .000 25.3 (1.6) .000
100%–199% FPL 38.0 (3.2) 53.5 (1.9) 30.7 (1.9) 75.6 (1.5) 31.1 (1.5)
200%–399% FPL 45.3 (2.6) 61.5 (1.5) 37.6 (1.7) 79.5 (1.1) 43.4 (1.3)
$400% FPL 53.5 (2.3) 66.2 (1.4) 42.8 (1.7) 82.5 (0.9) 52.2 (1.2)
Impact on activities
Always/usually/great deal
affected
38.2 (2.5) .000 52.6 (1.7) .000 29.9 (1.6) .000 63.5 (1.4) .000 25.5 (1.2) .000
Somewhat/moderately
affected
44.6 (2.1) 59.2 (1.3) 33.6 (1.3) 80.9 (0.9) 39.2 (1.1)
Never affected 49.1 (2.4) 64.5 (1.4) 42.5 (1.6) 86.0 (0.8) 52.0 (1.2)
Emotional, behavioral, or
developmental conditions
Yes 39.3 (2.1) .000 51.5 (1.4) .000 28.7 (1.3) .000 68.1 (1.1) .000 28.9 (1.1) .000
No 46.6 (1.7) 63.4 (1.0) 39.2 (1.1) 83.5 (0.7) 46.1 (0.9)
Medical home
Yes
d
53.7 (2.2) .000 72.2 (1.2) .000 46.5 (1.4) .000 89.5 (0.6) .000 55.0 (1.0) .000
No 38.6 (1.8) 51.1 (1.1) 28.8 (1.1) 70.0 (0.9) 29.2 (0.9)
Insurance coverage
Private 50.0 (1.8) .000 65.0 (1.0) .000 40.4 (1.2) .000 83.1 (0.7) .000 50.2 (0.9) .000
Public 36.3 (2.4) 52.5 (1.5) 27.9 (1.5) 72.3 (1.3) 25.8 (1.2)
Both 45.4 (4.5) 61.1 (3.0) 45.0 (3.1) 68.0 (2.5) 33.3 (2.5)
Uninsured 24.0 (5.8) 36.8 (4.6) 22.2 (5.6) 67.9 (3.7) 19.6 (3.8)
a
x
2
test of independence.
b
All other includes respondents identified as Asian, Alaska Native, American Indian, Native Hawaiian, Pacific Islander, or Mixed Race.
c
Based on the US Department of Health and Human Services poverty guidelines. For most households surveyed in 2009 and 2010, 100% of the pover ty level was defined as $22 050 f or
a family of 4.
d
Meets MCHB criteria for a medical home.
ARTICLE
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need with no impact on activities; hav-
ing a condition other than an emo-
tional, behavioral, or developmental
condition; receiving care within a medi-
cal home; and having insurance cover-
age. Although there are no significant
differences among younger and older
adolescents in terms of meeting the
overall transition outcome, age differ-
ences were observed for all 4 component
measures. Parents of older adoles-
cents (ages 15–18) compared with
those of their younger peers are more
apt to report having specific transition
discussions with their health care
provider.
The demographic, health, and health
care factors associated with not
meeting the transition core outcome
and its 4 component measures were
identified by using an adjusted logistic
regression model, as seen in Table 4.
Male gender is associated with
a higher likelihood of not meeting the
transition outcome (odds ratio [OR]:
1.35, 95% confidence interval (CI): 1.19–
1.53) and component measures. Older
age (15–18 years) is associated with
a higher likelihood of not meeting the
transition outcome (OR: 1.15, 95% CI:
1.02–1.31), but a lower likelihood of not
meeting the component measures. This
is most likely due to the difference in
calculation method for the core out-
come, which counts those who report
not needing a given service as meeting
the outcome and its component
measures, which exclude these indi-
viduals from the calculation. Because
parents of younger adolescents are
less likely to report that transition
services are needed, they thus appear
to perform better on the transition
outcome. Non-Hispanic black race and
Hispanic ethnicity were both associ-
ated with a higher likelihood of not
meeting the transition outcome (OR:
1.51, 95% CI: 1.23 –1.84, and OR: 1.56,
95% CI: 1.17–2.10, respectively). No sig-
nificant association is observed between
speaking a language other than English
in the home and meeting the transi-
tion outcome or component measures.
Household income between 100% and
400% FPL is associated with a higher
likelihood of not meeting the transi-
tion outcome (OR: 1.28, 95% CI: 1.03–
1.58 for 100% to 199% FPL and OR: 1.18,
95% CI: 1.01–1.38 for 200% to 399%
FPL).
YSHCN whose activities are significantly
affected by their condition have a higher
likelihood of not meeting the transition
outcome (OR: 1.90, 95% CI: 1.59–2.26)
and a higher likelihood of not being
usually or always encouraged to take
greater responsibility for care. Having
an emotional, behavioral, or develop-
mental condition, or lacking a medical
home, are also associated with a
higher likelihood of not meeting the
transition outcome (OR: 1.40, 95% CI:
1.21–1.61, and OR: 2.13, 95% CI: 1.88–
2.41, respectively) and component
measures. In addition, those without
insurance or with public insurance
have a higher likelihood of not meeting
the transition outcome (OR: 2.33, 95%
CI: 1.46–3.74, and OR: 1.75, 95% CI: 1.42–
2.16, respectively) and component
measures.
DISCUSSION
This study demonstrates that most
YSHCN are not receiving needed prep-
aration from their health care pro-
viders about transition from pediatric
to adult health care. Although most
health care providers are encouraging
YSHCN to assume greater responsibility
for their own health care, far fewer are
discussing transfer to an adult health
care provider and health insurance
continuity. Although the change in
sample design (inclusion of cell phone
sample households) limits our ability to
comment with certainty on trends,
there have been no discernible
improvements since this national
transition outcome was last measured
in the 2005–2006 NS-CSHCN. Moreover,
similar disparities persist by gender,
race/ethnicity, socioeconomic and in-
surance status, household language,
type of condition, extent of impact on
activities, and availability of a medical
home.
7
Despite numerous efforts to educate
consumers and providers about health
care transition since 2005–2006, it
appears that they were important but
not sufficient to influence widespread
improvements in transition prepara-
tion. More focused attention to ado-
lescent subgroups whose transition
performance lags behind will likely
produce future improvements, includ-
ing males; blacks and Hispanics; those
with lower incomes; those with dis-
abilities; those with mental, behavioral,
or developmental conditions; those
not in a medical home; and those
lacking insurance coverage. Results
from our study also indicate that many
parents do not perceive that transi-
tion needs to be addressed until late
in adolescence, which clearly impedes
transition preparation. Consequently,
expanded efforts are needed to edu-
cate parents and other caregivers
about the significance of transition
along with practical steps they can
take to support their youth in self-care
management and to partner with
health care providers in identifying
adult medical home and specialty
providers.
It is also evident from our analysis that
national transition performance is
based on the sum of many distinct and
interrelated steps and not the result of
any 1 specific intervention. That is, al-
though increasing the percentage of
youth who take responsibility for their
care is critically important, also nec-
essary is expressly addressing transfer
to adult-focused care. In 2011, a clear
protocol for transition preparation with-
ina medical home model was published,
which addresses the necessary steps
1094 MCMANUS et al by guest on December 31, 2015Downloaded from
for transition.
3
Since that time, the
federally funded National Health Care
Transition Center has expanded the
availability of clinical tools and pro-
cesses to implement these professional
recommendations.
12
Health care tran-
sition learning collaboratives, with pe-
diatric, family medicine, and internal
medicine sites in the District of Colum-
bia, Boston, Denver, and New Hamp-
shire, are currently piloting primary
care quality approaches to health care
transition.
13
These sites are implemen-
ting core elements of the transition
preparation process consistent with
new professional recommendations, in-
cluding the use of (1) a written transition
policy, (2) a registry for identification
and tracking of patients, (3) planning
tools (transition readiness assessment,
portable medical summary, and transi-
tion action plan), and (4) timely and
organized transfer to adult health care
providers. Early evaluation from these
transition learning collaboratives sug-
gests substantial improvement.
14
The
spread of quality improvement efforts
among pediatric and adult physicians
will likely gain momentum with these
available resources and with addi-
tional training of pediatric and adult
providers, including increasing the
capability of the adult system of care
TABLE 4 Adjusted OR of YSHCN, Ages 12 to 18, Not Meeting the Transition Core Outcome and Individual Measures, According to Selected
Sociodemographic Factors: United States, 2009–2010
Components, Adjusted OR (CI)
a
Did Not Discuss
Shift to Adult
Provider
Did Not Discuss Adult
Health Care Needs
Did Not Discuss
Health Insurance
Youth Not Usually/ Always
Encouraged to Take
Responsibility
Youth Did Not Receive
Services Necessary to Make
Transition to Adult Life
Gender
Female 1.00 1.00 1.00 1.00 1.00
Male 1.18 (0.95–1.47) 1.39 (1.20–1.60)
b
1.26 (1.08–1.48)
b
1.24 (1.06–1.45)
b
1.35 (1.19–1.53)
b
Age, y
12–14 1.00 1.00 1.00 1.00 1.00
15–17 0.62 (0.50–0.77)
b
0.93 (0.81–1.08) 0.85 (0.73–1.00)
b
0.81 (0.70–0.94)
b
1.15 (1.02–1.31)
b
Race/Ethnicity
Non-Hispanic white 1.00 1.00 1.00 1.00 1.00
Non-Hispanic black 1.27 (0.92–1.77) 1.32 (1.07–1.63)
b
0.83 (0.65–1.06) 1.28 (1.03–1.60)
b
1.51 (1.23–1.84)
b
Hispanic 1.44 (0.98–2.12) 1.08 (0.82–1.41) 1.25 (0.90–1.73) 0.92 (0.68–1.24) 1.56 (1.17–2.10)
b
All other
c
0.70 (0.47–1.05) 0.94 (0.72–1.22) 0.96 (0.71–1.31) 1.05 (0.82–1.35) 1.07 (0.82–1.41)
Primary language in home
English 1.00 1.00 1.00 1.00 1.00
Not English 1.39 (0.72–2.67) 1.74 (1.08–2.77)
b
1.16 (0.65–2.06) 1.26 (0.77–2.04) 1.67 (0.93–3.02)
Poverty status
,100% FPL
d
1.05 (0.67–1.64) 1.01 (0.77–1.33) 1.20 (0.86–1.66) 0.88 (0.66–1.17) 1.19 (0.92–1.55)
100%–199% FPL 1.12 (0.75–1.66) 1.14 (0.90–1.44) 1.25 (0.96–1.63) 0.88 (0.67–1.15) 1.28 (1.03–1.58)
b
200%–399% FPL 1.20 (0.90–1.60) 1.05 (0.87–1.27) 1.14 (0.92–1.41) 0.96 (0.78–1.18) 1.18 (1.01–1.38)
b
$400% FPL 1.00 1.00 1.00 1.00 1.00
Impact on activities
Always/usually/great
deal affected
1.08 (0.80–1.46) 1.13 (0.93–1.38) 1.24 (0.99–1.55) 2.29 (1.85–2.83)
b
1.90 (1.59–2.26)
b
Somewhat/moderately
affected
0.95 (0.73–1.22) 1.06 (0.90–1.25) 1.27 (1.06–1.52)
b
1.16 (0.96–1.41) 1.32 (1.15–1.51)
b
Never affected 1.00 1.00 1.00 1.00 1.00
Emotional, behavioral,
or developmental conditions
No 1.00 1.00 1.00 1.00 1.00
Yes 1.23 (0.96–1.56) 1.36 (1.16–1.59)
b
1.34 (1.11–1.61)
b
1.52 (1.28–1.80)
b
1.40 (1.21–1.61)
b
Medical home
Yes
e
1.00 1.00 1.00 1.00 1.00
No 1.44 (1.15–1.80)
b
1.88 (1.62–2.17)
b
1.76 (1.50–2.06)
b
2.48 (2.11–2.90)
b
2.13 (1.88–2.41)
b
Insurance coverage
Private 1.00 1.00 1.00 1.00 1.00
Public 1.39 (0.97–2.00) 1.26 (1.01–1.56)
b
1.35 (1.06–1.73)
b
1.33 (1.05–1.69)
b
1.75 (1.42–2.16)
b
Both 0.94 (0.61–1.45) 0.86 (0.64–1.15) 0.61 (0.45–0.83)
b
1.52 (1.13–2.03)
b
1.21 (0.93–1.56)
Uninsured 2.21 (1.18–4.16)
b
2.16 (1.44–3.23)
b
1.68 (0.90–3.14) 1.55 (0.99–2.41) 2.33 (1.46–3.74)
b
a
Adjusted for all other covariates in the table.
b
Significant at the P#.05 level.
c
All other includes respondents identified as Asian, Alaska Native, American Indian, Native Hawaiian, Pacific Islander, or Mixed Race.
d
Based on the US Department of Health and Human Services poverty guidelines. For most households surveyed in 2009 and 2010, 100% of the poverty level was defined as $22 050 for
a family of 4.
e
Meets MCHB criteria for a medical home.
ARTICLE
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by guest on December 31, 2015Downloaded from
to address the needs of individuals
with childhood-onset conditions.
Clearly, payment incentives for both
pediatric and adult practices will help to
accelerate the adoption of clinical
recommendations on transition. This
includes recognizing the added time
and resources associated with imple-
menting the core elements of transition.
Although efforts are under way by the
Centers for Medicare and Medicaid
Services to finance transition services
for Medicare beneficiaries moving from
hospital to community-based care,
comparable program and payment
efforts have not been initiated for
transfer from pediatric to adult health
care settings. New investment in tran-
sition payment reform, consistent with
the American Academy of Pediatrics/
American Academy of Family Physicians/
American College of Physicians joint
transition statement, is needed by
public and private payers. Certainly
health insurance coverage expan-
sions for older adolescents and young
adults under the ACA will positively
influence future transition outcomes
as well.
It is evident from our analysis that
having a medical home substantially
increases the odds of having transition
discussions. Further improvements in
transition preparation will be more
likely if the transition process is in-
corporated into the medical home
model of care with its team-based
coordinated care, updated clinical sum-
maries, emphasis on self-care manage-
ment, comprehensive assessments,
care management support, organized
adult referral networks, and mecha-
nisms to proactively manage transfers
and monitor success.
2
As new stand-
ards and health information technol-
ogy for the patient-centered medical
home are developed and updated, the
core elements of successful transition
from pediatric to adult health care
should be incorporated.
Our analysis is limited by several factors.
The cross-sectional study design of the
NS-CSHCN allows us to examine only
correlation and not causation between
thetransitioncoreoutcomeandkey
factors of interest. Information from the
NS-CSHCN is reported by parents rather
than by youth, which may over- or un-
derestimate the actual extent to which
transition discussions took place. The
transition core outcome is reflective
only of the extent to which parents re-
port that transition discussions took
place when needed. Further, the survey
does not query parents about other
factors that could affect transition
preparation, including the parent-child
relationship, health care provider
characteristics, or access to self-care
programs or other transition support
services.
CONCLUSIONS
Our findings suggest that a much more
concerted focus is needed to achieve
progress in transition from pediatric to
adult health care for YSHCN, prioritizing
those least likely to receive transition
support. Such efforts should be care-
fully integrated within the medical
home model of care, payment reforms,
insurance expansions, and health in-
formation technology implementation.
ACKNOWLEDGMENTS
We gratefully acknowledge the assis-
tance of Paul Newacheck from the Uni-
versity of California, San Francisco’s
Philip R. Lee Institute for Health Policy
Studies for critically reviewing the ar-
ticle, Scott Stumbo from the Child and
Adolescent Health Measurement Initia-
tive at Oregon Health and Science Uni-
versity for helping us access and
convert the NS-CSHCN data into a us-
able format, and Jessica Jones from
the Maternal and Child Health Bureau
for comparing data estimates.
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Washington, DC
THE REAL RICHARD: “A horse! A horse! My kingdom for a horse!”Whether those
words are at all similar to the last words ever spoken by King Richard III of
England is not known, but what we do know is despite William Shakespeare’s
depiction, he was not a hunchback. As reported on CNN (World: February 5, 2013),
the remains of the last King of the Plantagenet dynasty and the last English King to
die in battle have been found beneath a parking lot. After his death at the Battle of
Bosworth Field, Richard III’s body was buried in a shallow grave too small for his
frame. The exact location of the burial site was soon forgotten. However, an
obscure medieval report that Richard III may have been buried at Greyfriars
Priory intrigued historians. Last year, scholars at the University of Leicester
began digging where the monastery stood. Amazingly, they found a skeleton that
seemed to match that of Richard III. Although missing both feet, scientists could
determine that Richard III was well nourished, about 5’8’’ tall, and had severe
scoliosis but no hunchback or withered arm. The skeleton had evidence of
multiple battle wounds including several to the head. He most likely was stabbed
several times after death, which was a common practice at the time. While the
skeleton seemed to match the historical records, the proof that Richard III had
been found came from mitochondrial DNA extracted from the teeth of the skel-
eton. Mitochondrial DNA changes very little from generation to generation and is
only inherited from the mother. The extracted mitochondrial DNA exactly matched
that of direct descendent of Richard III’s sister, Anne of York, and another distant
relative. The skeleton was found just in time, as neither of his last direct
descendants has daughters. Whether Richard III’s reputation will be rehabilitated
remains to be seen. He will, however, be reinterred with the dignity of a ruling
English monarch, most likely in Leicester Cathedral.
Noted by WVR, MD
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Debra Lotstein, Bonnie Strickland and Marie Y. Mann
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the United States
Current Status of Transition Preparation Among Youth With Special Needs in
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