Receipt of Health Care Transition Counseling in the National Survey of Adult Transition and Health

Abstract

The goal of this study was to examine factors associated with receiving health care transition counseling services as reported by young adults.
We analyzed data from the 2007 Survey of Adult Transition and Health, a nationwide survey of young adults aged 19 to 23 years conducted by the National Center for Health Statistics, to explore self-reported receipt of services to support transition from pediatric to adult health care. Multivariate logistic regression was used to identify whether sociodemographic characteristics, health status, or markers of provider-youth health communication were associated with the receipt of 3 key transition counseling services.
Among the 1865 Survey of Adult Transition and Health respondents, 55% reported that their physicians or other health care providers had discussed how their needs would change with age, 53% reported that their physicians or other health care providers had discussed how to obtain health insurance as an adult, and 62% reported having participated in a transition plan in school. Only 24% reported receiving all 3 transition counseling services. In multivariate logistic regression analyses, although gender, age, and race were not associated with increased receipt of the transition-related outcomes, markers of strong communication with the health system were associated with increased rates of receiving transition guidance.
Many young adults reported not having received health care transition counseling. Provider-youth communication was associated with increased health care transition guidance, and suggests that a medical home model that promotes anticipatory guidance for health care transition could promote improvements in the transition process.

Full text

Receipt of Health Care Transition Counseling in the
National Survey of Adult Transition and Health
WHAT’S KNOWN ON THIS SUBJECT: Successful transition from
pediatric to adult-centered health care requires structured
counseling for youth from their health care providers.
WHAT THIS STUDY ADDS: In a national survey of young adults,
we found that many do not report receiving anticipatory guidance
regarding transition to adult care. Improved communication with
health care providers is associated with receipt of more
guidance regarding health care transition.
abstract
OBJECTIVE: The goal of this study was to examine factors associated
with receiving health care transition counseling services as reported
by young adults.
METHODS: We analyzed data from the 2007 Survey of Adult Transition
and Health, a nationwide survey of young adults aged 19 to 23 years
conducted by the National Center for Health Statistics, to explore self-
reported receipt of services to support transition from pediatric to
adult health care. Multivariate logistic regression was used to identify
whether sociodemographic characteristics, health status, or markers
of provider-youth health communication were associated with the re-
ceipt of 3 key transition counseling services.
RESULTS: Among the 1865 Survey of Adult Transition and Health re-
spondents, 55% reported that their physicians or other health care
providers had discussed how their needs would change with age, 53%
reported that their physicians or other health care providers had dis-
cussed how to obtain health insurance as an adult, and 62% reported
having participated in a transition plan in school. Only 24% reported
receiving all 3 transition counseling services. In multivariate logistic
regression analyses, although gender, age, and race were not associ-
ated with increased receipt of the transition-related outcomes, mark-
ers of strong communication with the health system were associated
with increased rates of receiving transition guidance.
CONCLUSIONS: Many young adults reported not having received
health care transition counseling. Provider-youth communication was
associated with increased health care transition guidance, and sug-
gests that a medical home model that promotes anticipatory guidance
for health care transition could promote improvements in the transi-
tion process. Pediatrics 2011;128:e521–e529
AUTHORS: Gregory S. Sawicki, MD, MPH,
a
Ruth Whitworth,
MBA,
b
Laura Gunn, PhD,
b
Ryan Butterfield, DrPH,
c
Katryne
Lukens-Bull, MPH,
c
and David Wood, MD, MPH
c,d
a
Division of Respiratory Diseases, Children’s Hospital Boston,
Harvard Medical School, Boston, Massachusetts;
b
Karl E. Peace
Center for Biostatistics, Jiann-Ping Hsu College of Public Health,
Georgia Southern University, Statesboro, Georgia;
c
Center for
Health Equity and Quality Research, and
d
Department of
Pediatrics, University of Florida, College of
Medicine–Jacksonville, Jacksonville, Florida
KEY WORDS
health care transition, anticipatory guidance, special health
care needs
ABBREVIATIONS
YSHCN—youth with special health care needs
HCT—health care transition
NS-CSHCN—National Survey of Children with Special Health Care
Needs
SATH—Survey of Adult Transition and Health
SHCN—special health care need
OR—odds ratio
CI—confidence interval
Drs Sawicki and Wood were responsible for study design, data
analysis, preparation and revision of the manuscript; Ms
Lukens-Bull was responsible for study design, data acquisition,
and revision of the manuscript; and Ms Whitworth, Dr
Butterfield, and Dr Gunn were responsible for data analysis, and
preparation and revision of the manuscript.
www.pediatrics.org/cgi/doi/10.1542/peds.2010-3017
doi:10.1542/peds.2010-3017
Accepted for publication May 13, 2011
Address correspondence to Gregory S. Sawicki, MD, MPH,
Division of Respiratory Diseases, Children’s Hospital Boston, 300
Longwood Ave, Boston, MA 02115. E-mail: gregory.sawicki
@childrens.harvard.edu
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
Copyright © 2011 by the American Academy of Pediatrics
FINANCIAL DISCLOSURE: The authors have indicated they have
no financial relationships relevant to this article to disclose.
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Over the past several decades, many
more youth with special health care
needs (YSHCN) are surviving well into
adulthood.1,2 As a result, services to
support health care transition (HCT) to
adult-oriented health care are increas-
ingly critical.3,4 Individual, disease-
specific, health system, and health
insurance–related factors may facili-
tate or impede provision of adequate
services to youth before and during
HCT. This transition should start in
early adolescence and involves individ-
ualized planning and ongoing skills de-
velopment.5However, for many youth,
HCT is disorganized because of many
different factors, including lack of
transition counseling by pediatric pro-
viders, developmental challenges of
the youth themselves, lack of social
supports, poor communication and co-
ordination of care between pediatric
and adult health care systems, and
gaps in insurance at the age of transi-
tion.3Youth may be precipitously dis-
charged out of pediatric care without
appropriate follow-up5,6 or they may
transfer from pediatric-centered
health systems without the skills and
knowledge needed to succeed in an
adult-oriented system.
Receipt of anticipatory guidance re-
garding transition has been linked to
improved health outcomes. For exam-
ple, counseling led to improved adher-
ence with appointments for young peo-
ple with juvenile idiopathic arthritis7
and improved adherence and disease
control in young adults with diabe-
tes.8–10 A composite of 4 aspects of an-
ticipatory guidance to support HCT is
used as 1 of the 6 Maternal and Child
Health Bureau system-wide quality in-
dicators for community-based ser-
vices geared toward YSHCN.11 Previous
research from the National Survey of
Children with Special Health Care
Needs (NS-CSHCN) revealed that only a
minority of parents of YSHCN report
having discussed transition with their
adolescent’s physician12 and only 30%
had a plan for addressing transition
needs.13 In a subanalysis of the NS-
CSHCN restricted to those aged 12 to
17 years, less than half had received
transition guidance by their pediatric
health providers.14 Taken together,
these data suggest that many YSHCN,
regardless of disease severity, are not
receiving anticipatory guidance to sup-
port transition to adult care from their
pediatric health care providers. In ad-
ditional, from a health system per-
spective, an analysis of the 2005 NS-
CSHCN revealed that the presence of a
medical home and provision of ade-
quate health insurance predicted an
individual state’s performance (high,
medium, or low) on the Maternal and
Child Health Bureau transition ser-
vices quality metric.14 This finding sug-
gests that a focus on health coverage
and development of medical home
models could improve provision of HCT
services. Failure to receive such ser-
vices has been associated with delays
in health care and lack of future health
coverage.15
In this study, we examined the receipt
of transition-related anticipatory guid-
ance by 1865 youth and young adults,
aged 19 to 23 years, participating in
the 2007 Survey of Adult Health and
Transition (SATH), a 6-year follow-up
survey of the 14- to 17-year-old chil-
dren who had participated in the 2001
NS-CSHCN. This survey is the first of
young adults to assess their self-
reported experience during the period
of expected transition to adult-
centered care. On the basis of previous
work highlighting disparities in ac-
cessing the medical home based on so-
ciodemographic characteristics,16 we
were particularly interested in exam-
ining the hypothesis that sociodemo-
graphic factors—particularly race/
ethnicity, insurance status, and health
status—would be associated with re-
ceipt of HCT counseling. In addition, be-
cause communication with health care
providers is a key component of a high-
quality medical home,17 we examined
the association between the quality of
communication with health care pro-
viders and receipt of transition ser-
vices among the SATH cohort, hypothe-
sizing that youth rating their providers
higher on communication would also
report higher rates of receiving guid-
ance regarding HCT.
METHODS
Data set
The 2007 SATH was conducted by the
National Center for Health Statistics to
explore self-reported transition pro-
cesses and outcomes for young adults.
SATH was a nationwide telephone sur-
vey of young adults aged 19 to 23 years
whose parents were interviewed when
the youth were 14 to 17 years old in the
2001 NS-CSHCN. Researchers identified
10 933 cases that were eligible for
follow-up, and the resulting SATH data
set includes 1865 of the 1916 inter-
views completed with the young
adults.18 The primary reason for the
low response rate (17.5%) was the in-
ability to contact the potential respon-
dents. The cooperation rate once con-
tacted was very high (97%). The
strengths and weaknesses of the sur-
vey as well as the methods are dis-
cussed at www.cdc.gov/nchs/slaits/
sath.htm.
Variables
Primary Outcome Measures: Receipt
of Transition Counseling
The SATH contained 3 distinct ques-
tions assessing a respondent’s receipt
of anticipatory guidance or counseling
regarding health care transition: (1)
“Have your doctors or other health
care providers talked with you about
how your health care needs might
change as you got older?”; (2) “Eligibil-
ity for health insurance often changes
as children reach adulthood. Has any-
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one discussed with you how to obtain
or keep some type of health insurance
coverage?”; and (3) “Did you ever meet
with adults at school or somewhere
else to set goals for what you would do
after high school and make a plan for
how to achieve them? Sometimes this
is called a transition plan.” Binary re-
sponses to each of these 3 questions,
which we refer to as Transition Coun-
seling Outcomes 1 (Discuss Change in
Needs), 2 (Discuss Health Insurance),
and 3 (Make a Plan), respectively,
served as the primary outcomes for
our analyses.
Young Adult and Family-Level
Variables
We included sociodemographic vari-
ables from the SATH data set, including
age, gender, and race/ethnicity. In-
come was reported by the young adult
and categorized in 4 levels: ⬍200%
federal poverty level, 200% to 400%
of federal poverty level, ⬎400% of the
federal poverty level, or “don’t know/
refused.” To measure educational at-
tainment, we included data on whether
the young adult reported having re-
ceived a high school diploma and
whether he or she received special ed-
ucation services. We included health
insurance status as reported by the
young adult dichotomized into “contin-
uous insurance” if they were insured
all of the previous 12 months or “no
insurance or a gap in insurance in the
past 12 months” if they had ⱖ1 months
with no insurance during the past 12
months. Data on maternal education,
dichotomized into high school diploma
or less, and any post– high school edu-
cation, was obtained through linking
the SATH data with the parental re-
sponses from the 2001 NS-CSHCN.
Health Status and Medical Home
Variables
The health status variables used in the
analysis were obtained from the 2007
SATH questions. Respondents were
asked to rate their general health,
which we categorized as excellent,
very good, good, and fair–poor. We in-
cluded dichotomous indicators to the
responses for the following questions:
“A person with special health care
needs is someone who needs special
health care services because of a med-
ical, mental health, or other health
condition. People with special health
care needs might need medicine, ther-
apy, or specialty care on a regular
basis—stuff other people don’t typi-
cally need or only need once in a while.
Do you consider yourself to have a spe-
cial health care need?” We defined a
respondent as having an “activity limi-
tation” if they answered yes to any of 3
questions assessing limitations due to
health concerns. Current assessment of
health status was based on the response
to a question asking respondents to rate
their health status in the 2007 survey
compared with their reported health in
2001 and was categorized into “better”
or “worse or about the same.”
The key components of a medical home
include a usual place of comprehen-
sive care, an accessible place of
care, care coordination, and patient-
centered care.19,20 In the 2001 NS-
CSHCN, individual components of the
medical home were assessed and re-
ported as a composite medical home
variable.21 In the data set, the compos-
ite medical home variable was con-
structed by combining responses to
several questions. For some questions,
skip patterns were built into the sur-
vey design such that the number of ob-
servations for each of the individual
characteristics of the medical home
varied. Because of the skip patterns,
therefore, many SATH respondents
had missing data for the composite
medical home variable, precluding our
use of this particular variable in our
analysis. Instead, we identified 2 key
aspects of the medical home as key
predictors in our analysis. We included
dichotomous indicators of whether the
young adult reported having a per-
sonal physician or nurse as a marker
of a usual place of care, and we ana-
lyzed questions related to communica-
tion as markers of accessible and
family-centered care.
Health Communication Variables
In the SATH survey, the following 5
questions related to communication
during the past 12 months with health
care providers were asked: (1) “How
often did your doctors and other
health care providers spend enough
time with you?”; (2) “How often did
your doctors and other health care
providers listen carefully to you?”; (3)
“How often did your doctors or other
health care providers help you feel like
a partner in your care?”; (4) “How often
did you get the specific information
you needed from your doctors and
other health care providers”; and (5)
“How often are your doctors and other
health care providers sensitive to your
values and customs?” Responses to
these questions were initially catego-
rized as always, usually, sometimes, or
never and were dichotomized in our
analyses to “always” versus “other.”
Statistical Analyses
Descriptive statistics were used to
summarize the sociodemographic,
health status, and health communica-
tion characteristics reported with the
SATH cohort. Bivariate analyses for
identifying potential associations were
conducted for all covariates of interest
with the 3 transition services out-
comes. Correlation coefficients were
assessed for all covariates. No covari-
ates had a sufficiently high (⬎0.7) cor-
relation to be a threat for collinearity
in the multivariate analyses. A sepa-
rate stepwise backward elimination
multivariate logistic regression model
was run for each of the 3 transition
counseling outcomes. Each logistic re-
gression model included the sociode-
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mographic variables, health status in-
dicators, and health communication
covariates. The multivariate regres-
sion analyses were conducted using
the PROC LOGISTIC backward stepwise
selection modeling technique to iden-
tify significant factors associated with
each of the 3 outcomes. All analyses
were conducted in SAS 9.2 (SAS Insti-
tute, Inc, Cary, NC).
RESULTS
Characteristics of the SATH Cohort
The SATH cohort was predominantly
white (90%), and a high percentage of
respondents had high school diplomas
(91%) (Table 1). A majority of respon-
dents (65%) reported their health as
excellent or very good, and only 31%
reported having a current special
health care need (SHCN) (Table 2).
Most respondents (73%) reported hav-
ing a personal physician or nurse. Re-
spondents’ assessments of different
aspects of health care communication
from their providers were generally
positive, with 42% to 62% of respon-
dents answering “always” to the spe-
cific communication processes as-
sessed in the survey (Table 2).
Reported Receipt of Transition
Counseling
Fig 1 displays the percentage of re-
spondents who positively reported re-
ceiving any of the specific transition
counseling assessed in SATH: 87% re-
ported receiving counseling in at least
1 of the 3 transition topics, 55% re-
ported that their physicians or other
health care providers had discussed
how their needs might change with
age (Discuss Change in Needs), 53%
reported that their physicians or other
health care providers had discussed
how to keep or obtain health insurance
as an adult (Discuss Health Insurance),
and 62% reported having a plan for what
to do after high school (Make a Plan).
Thirty-four percent reported receiving
the 2 health-related transition counsel-
ing outcomes, and only a minority of re-
spondents (24%) reported receiving all
3 transition counseling outcomes as-
sessed in the survey.
Factors Associated With Reporting
Health Care Transition Counseling
In the multivariate analysis for Transi-
tion Counseling Outcome 1 (Discuss
TABLE 1 SATH Respondent Characteristics:
Demographic Characteristics
(N⫽1865)
Characteristic Value
Age, mean, y 21.4
Gender
Male 1011 (54)
Female 852 (46)
Race/ethnicity
White 1668 (90)
Non-white 193 (10)
Income
⬍200% federal poverty level 362 (20)
200%–400% federal poverty level 671 (36)
ⱖ400% federal poverty level 658 (35)
Do not know/refused 174 (9)
High school diploma 1681 (91)
Receives special education 473 (26)
Maternal education
8th grade or less 12 (1)
Some high school, not graduated 53 (3)
High school 379 (21)
Some post–high school but not a
4-y degree
494 (27)
4-y degree or more 876 (48)
Insurance status
Continuous insurance 1214 (65)
Gap in insurance or no
insurance
651 (35)
Values are n(%), other otherwise noted.
TABLE 2 SATH Respondent Characteristics: Health Status (N⫽1865)
General health
Excellent 404 (22)
Very good 810 (43)
Good 509 (27)
Fair–poor 141 (8)
Health status, 2007 vs 2001
Better 561 (30)
Worse 197 (11)
About the same 1101 (59)
Reports having SHCN 574 (31)
Reports any activity limitation 355 (19)
Reports having disability 394 (21)
Reports having personal physician or nurse 1350 (73)
Over the past 12 mo, how often did your doctors spend enough time with you?
Always 740 (42)
Usually 511 (29)
Sometimes 360 (21)
Never 146 (8)
Over the past 12 mo, how often did your doctors listen carefully to you?
Always 962 (55)
Usually 525 (30)
Sometimes 208 (12)
Never 65 (3)
Over the past 12 mo, how often did your doctors help you feel like a partner?
Always 769 (44)
Usually 596 (34)
Sometimes 279 (16)
Never 109 (6)
How often did you get enough information from doctors regarding medical
problems?
Always 821 (47)
Usually 583 (33)
Sometimes 264 (15)
Never 87 (5)
How often were providers sensitive to family’s values/customs?
Always 1079 (62)
Usually 455 (26)
Sometimes 176 (10)
Never 46 (2)
Values are given as n(%).
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Change in Needs) (adjusted R
2
: 11.7%),
respondents with mothers with lower
educational attainment were more
likely to report that a physician or
other health care providers had dis-
cussed how health care needs might
change with age (odds ratio [OR]: 1.4
[95% confidence interval (CI): 1.1–1.8])
(Table 3). Those reporting a SHCN (OR:
1.5 [95% CI: 1.2–1.8]) were more likely
and those with a health status that was
worse or the same compared with
2001 were less likely (OR: 0.7 [95% CI:
0.6 – 0.9]) to report having had discus-
sions on changing health care needs.
Having a personal physician or nurse
was associated with increased odds of
discussing how needs might change
with age (OR: 1.8 [95% CI: 1.4 –2.3]).
Three of the 5 measures of communi-
cation were associated with Transi-
tion Counseling Outcome 1 (Discuss
Change in Needs): reporting that phy-
sicians always listened carefully (OR:
1.7 [95% CI: 1.4 –2.2]), reporting that
physicians always helped them feel
like a partner (OR: 1.4 [95% CI: 1.1–
1.7]), and always receiving enough in-
formation from their physician regard-
ing medical problems (OR: 1.4 [95% CI:
1.1–1.7]). Race, gender, income, and
respondent education were not asso-
ciated with this outcome.
In the multivariate analysis for Transi-
tion Counseling Outcome 2 (Discuss
Health Insurance) (adjusted R
2
: 3.8%),
only 2 sociodemographic variables
were significantly associated with this
outcome (Table 4): those with lower in-
come were less likely (OR: 0.7 [95% CI:
0.6 – 0.96]) and those receiving special
education were more likely (OR: 1.5
[95% CI: 1.2–1.9]) to have received
counseling on future health insurance
needs. No measures of health status
were significant in the multivariate
analysis. Two measures of health care
communication were associated with
increased odds of receiving counsel-
ing related to health insurance: report-
ing that physicians always helped
them feel like a partner (OR: 1.4 [95%
CI: 1.1–1.8]) and always receiving
enough information from their physi-
cian regarding medical problems (OR:
1.3 [95% CI: 1.02–1.6]).
The sociodemographic characteristics
associated with Transition Counseling
Outcome 3 (Make a Plan) (adjusted R
2
:
5.6%), were race, education, and insur-
ance status (Table 5). In addition,
lower maternal and youth educational
achievement were both associated
with a lower likelihood of the youth
having a transition plan in school.
Among the health status variables, re-
porting a SHCN was associated with
higher odds of having developed a
transition plan in school (OR: 1.3 [95%
CI: 1.0 –1.6]). Two of the 5 measures of
health care communication were asso-
ciated with this outcome in the multi-
variate analyses: reporting that their
physicians always spent enough time
with them (OR: 1.3 [95% CI: 1.03–1.6])
and reporting that their physicians al-
ways listened carefully (OR: 1.3 [95%
CI: 1.04 –1.6]).
DISCUSSION
In this study, we analyzed data from
the national SATH to assess factors as-
sociated with receipt of counseling
and anticipatory guidance regarding
preparing youth for HCT. Overall, just
more than one-half of respondents re-
ported receiving some counseling re-
garding HCT, and markers of good
communication with health providers
were consistently associated with in-
creased likelihood of reported coun-
seling regarding HCT.
The SATH respondents generally re-
ported good health, and interestingly,
only a minority reported having a cur-
rent SHCN, despite the fact that these
were individuals who were screened
as meeting criteria for a CSHCN in 2001
when their parents were enrolled in
the NS-CSHCN. At the same time, these
youth seemed quite connected to the
health care system, with 73% report-
ing that they could identify a personal
physician or nurse. However, only a mi-
nority of respondents reported having
received all 3 transition counseling
services. These results echo results of
previous national surveys that re-
vealed similar low rates of receipt of
transition guidance as reported by
parents of children aged 14 to 17
years.2,14 The SATH survey obtains data
regarding self-reported receipt of
transition services by youth aged 19 to
23 years, who by that age should have
FIGURE 1
Receipt of transition counseling outcomes by SATH respondents.
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received such guidance. The similar
rates of receipt of transition services
reported in the SATH and the NS-CSHCN
demonstrate that pediatric health pro-
viders are not consistently offering
transition-focused anticipatory guid-
ance. Consistent with our findings, a
recent survey of pediatricians also
found that less than half of pediatri-
cians provide assistance with refer-
rals to adult primary care or specialty
care for their adolescent patients with
SHCN.22 A 2002 Consensus Statement
issued by the American Academy of Pe-
diatrics, American Academy of Family
Physicians, and the American College
of Physicians stated as a goal that by
2010 “all physicians who provide pri-
mary or subspecialty care to young
people with special health care needs
[to] (1) understand the rationale for
transition from child-oriented to adult-
oriented health care; (2) have the
knowledge and skills to facilitate that
process; and (3) know if, how, and
when transfer of care is indicated.”3
Future work is needed to help develop
structured programs and tools for pe-
diatric providers to provide transition
guidance.
Very few sociodemographic or health
status indicators were associated with
either of the 2 health system–specific
transition services outcomes. Race
was not associated with either out-
come, although this finding could be a
function of the population sampled.
Lower maternal educational attain-
ment was associated with higher re-
ported rates of discussing how needs
would change with age, which could
reflect a youth’s earlier engagement in
their health care with a parent of
lower education. Importantly, youth
who self-identified as having a SHCN
were more likely to report having had
such discussions with their physi-
cians, which is encouraging in that
transition services and future plan-
ning are more critical in YSHCN.
TABLE 3 Multivariate Analysis for Transition Counseling Outcome 1: “Has Your Doctor Discussed
How Your Health Needs Might Change With Age”?
Demographics Bivariate
Logistic
Regression
Multivariate
Logistic
Regression
Gender
Male 0.9 (0.8–1.1) NS
Female Reference NS
Race/ethnicity
White Reference NS
Non-white 1.2 (0.9–1.6) NS
Income
⬍200% federal poverty level 1.2 (0.9–1.5) NS
200%–400% federal poverty level 1.0 (0.8–1.2) NS
ⱖ400% federal poverty level Reference NS
Do not know/refused 1.2 (0.8–1.6) NS
High school diploma
Yes Reference NS
No 1.1 (0.8–1.5) NS
Receives special education
Yes 1.1 (0.9–1.4) NS
No Reference NS
Maternal education
Less than high school/high school diploma 1.3 (1.0–1.6) 1.4 (1.1–1.8)
Post–high school and/or post–high school Reference Reference
Insurance status
Continuous insurance Reference NS
Gap in insurance or no insurance 0.8 (0.6–0.9) NS
Health status
General health
Excellent Reference NS
Very good 1.0 (0.8–1.3) NS
Good 1.3 (1.0–1.6) NS
Fair–poor 1.2 (0.8–1.7) NS
Health status, 2007 vs 2001
Better Reference Reference
Worse or about the same 0.8 (0.6–0.9) 0.7 (0.6–0.9)
Reports having SHCN
Yes 1.5 (1.2–1.8) 1.5 (1.2–1.8)
No Reference Reference
Reports any activity limitation
Yes 1.2 (1.0–1.6) NS
No Reference NS
Reports having disability
Yes 1.1 (0.9–1.4) NS
No Reference NS
Reports having personal physician or nurse
Yes 2.2 (1.8–2.7) 1.8 (1.4–2.3)
No Reference Reference
Health care communication
Over the past 12 mo, how often did doctors spend
enough time with you?
Always 1.9 (1.6–2.3) NS
Other Reference NS
Over the past 12 mo, how often did your doctors
listen carefully to you?*
Always 2.3 (1.9–2.8) 1.7 (1.4–2.2)
Other Reference Reference
Over the past 12 mo, how often did your doctors
help you feel like a partner?*
Always 2.1 (1.8–2.6) 1.4 (1.1–1.7)
Other Reference Reference
How often did you get enough information from
doctors regarding medical problems?*
Always 2.0 (1.6–2.4) 1.4 (1.1–1.7)
Other Reference Reference
How often were providers sensitive to family’s
values/customs?
Always 1.9 (1.6–2.3) NS
Other Reference NS
Values are given as odds ratio (95% confidence interval). NS indicates nonsignificant.
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The key indicators associated with
higher odds of receiving transition ser-
vices were related to provider-patient
health care communication, including
reporting that physicians always lis-
tened, provided adequate information,
or partnered with the young adult. Be-
cause communication is a key compo-
nent of a high-quality medical home,17
these findings lend further support to
the concept of a medical home in which
comprehensive, coordinated, ongoing
health care is provided to youth experi-
encing a health care transition.3An im-
portant finding of our study is that 27%
of the young adults in the SATH reported
no personal physician or nurse, higher
than those reported by parents of ado-
lescents before transition to adult-
hood.23 Youth who did not report having
a personal physician or nurse were less
likely to report having had discussions
about changing needs with age, suggest-
ing that a relationship with a medical
provider leads to increased engagement
in the transition planning process. These
results echo the findings from the 2005–
2006 NS-CSHCN that youth with a usual
source of care were more likely to re-
ceive counseling on their future needs.24
Better communication with health care
providers was also associated with
higher odds of reporting a school-based
transition plan. Taken together, our find-
ings underscore the importance of
family-centered care in the medical
home; specifically the individual relation-
ship between an adolescent or young
adult and his or her health care team, as
a key factor promoting education, trust,
and transition planning.3,24,25
Our analysis has several limitations.
We could not assess the association
between specific health conditions not
captured in the survey and HCT ser-
vices. However, the survey did have a
number of measures of health status,
including self-reported disability, spe-
cial health care needs, and health sta-
tus rating. An additional limitation is
TABLE 4 Multivariate Analysis for Transition Counseling Outcome 2: “Has Your Doctor Discussed
How to Obtain Health Insurance as an Adult?”
Demographic Characteristics Bivariate
Logistic
Regression
Multivariate
Logistic
Regression
Gender
Male 1.1 (0.9–1.4) NS
Female Reference NS
Race/ethnicity
White Reference NS
Non-white 1.0 (0.7–1.3) NS
Income
⬍200% federal poverty level 0.7 (0.5–0.9) 0.7 (0.6–0.96)
200%–400% federal poverty level 1.1 (0.9–1.3) 1.1 (0.9–1.3)
ⱖ400% federal poverty level Reference Reference
Do not know/refused 1.2 (0.8–1.7) 1.3 (0.9–1.8)
High school diploma
Yes Reference NS
No 1.0 (0.8–1.4) NS
Receives special education
Yes 1.4 (1.1–1.7) 1.5 (1.2–1.9)
No Reference Reference
Maternal education
Less than high school/high school diploma 0.9 (0.7–1.1) NS
Post–high school and/or post–high school degree Reference NS
Insurance status
Continuous insurance Reference NS
Gap in insurance or no insurance 0.8 (0.7–0.97) NS
Health status
General health
Excellent Reference NS
Very good 0.7 (0.6–0.9) NS
Good 0.7 (0.5–0.9) NS
Fair–poor 0.6 (0.4–0.8) NS
Health status, 2007 vs 2001
Better Reference NS
Worse or about the same 1.0 (0.8–1.2) NS
Reports having SHCN
Yes 1.0 (0.8–1.2) NS
No Reference NS
Reports any activity limitation
Yes 1.1 (0.8–1.4) NS
No Reference NS
Reports having disability
Yes 1.1 (0.9–1.4) NS
No Reference NS
Reports having personal physician or nurse
Yes 1.2 (0.9–1.4) NS
No Reference NS
Health care communication
Over the past 12 mo, how often did your doctors spend
enough time with you?
Always 1.4 (1.2–1.7) NS
Other Reference NS
Over the past 12 mo, how did your doctors listen
carefully to you?*
Always 1.4 (1.1–1.6) NS
Other Reference NS
Over the past 12 mo, how often did your doctors help
you feel like a partner?*
Always 1.6 (1.3–2.0) 1.4 (1.1–1.8)
Other Reference Reference
How often did you get enough information from your
doctors regarding medical problems?*
Always 1.5 (1.3–1.8) 1.3 (1.02–1.6)
Other Reference Reference
How often were providers sensitive to family’s
values/customs?
Always 1.3 (1.1–1.6) NS
Other Reference NS
Values are given as odds ratio (95% confidence interval). NS indicates nonsignificant.
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the relatively homogeneous nature of
the SATH cohort. Because of the diffi-
culty in finding youth who had partici-
pated in the 2001 NS-CSHCN, the re-
sponse rate was low and the final
cohort is not representative of the gen-
eral US population. An analysis of the
response bias by the National Center
for Health Statistics staff concluded
that youth who were more affluent and
those with continuous health insur-
ance were more likely to be located
and those who were black, poor, and
less educated were less likely to
be located (personal communication,
Kathleen O’Connor, MPH, written com-
munication, National Center for Health
Statistics, October 21, 2010). The diffi-
culty in finding youth who are undergo-
ing transition to adulthood underscores
the many changes that occur at this time
and which may undermine health care
services. Given the skewed SATH sample,
we may not have detected important
differences in transition counseling
services or other outcomes related to
health status, socioeconomic status,
and demographic factors. The results,
therefore, may not be generalizable
across race/ethnicity, geographic loca-
tion, health status, or socioeconomic
strata. In addition, our results may not
be applicable to the health care transi-
tion experience of youth with specific
chronic diseases that disproportionately
affect minority populations (eg, sickle
cell disease). We conjecture that the re-
ceipt of transition services might be
even lower among such young adults
who were not included in the SATH co-
hort. However, despite these limitations,
the SATH is the first national sample
that has attempted to survey young
adults with SHCN to assess their self-
reported experience during the period
of expected transition to adult-centered
care. We encourage future study of
young adults with SHCN and in broader
populations to evaluate their HCT ex-
perience and outcomes. Finally, al-
though the transition counseling out-
TABLE 5 Multivariate Analysis for Transition Counseling Outcome 3: “Have You Developed a
Transition Plan in School?”
Demographic Characteristic Bivariate
Logistic
Regression
Multivariate
Logistic
Regression
Gender
Male 0.9 (0.8–1.1) NS
Female Reference NS
Race/Ethnicity
White Reference Reference
Non-white 1.3 (0.9–1.8) 1.4 (1.03–2.0)
Income
⬍200% federal poverty level 0.7 (0.6–0.9) NS
200%–400% federal poverty level 0.8 (0.7–1.0) NS
ⱖ400% federal poverty level Reference NS
Do not know/refused 0.8 (0.6–1.1) NS
High school diploma
Yes Reference Reference
No 0.6 (0.4–0.8) 0.5 (0.4–0.8)
Receives special education
Yes 1.4 (1.1–1.7) 1.4 (1.1–1.8)
No Reference Reference
Maternal education
Less than high school/high school diploma 0.7 (0.6–0.9) 0.8 (0.6–0.96)
Post–high school and/or post–high school degree Reference Reference
Insurance status
Continuous insurance Reference Reference
Gap in insurance or no insurance 0.6 (0.5–0.7) 0.7 (0.6–0.9)
Health status
General health
Excellent Reference NS
Very good 0.8 (0.6–1.0) NS
Good 0.7 (0.5–0.9) NS
Fair–poor 0.6 (0.4–0.9) NS
Health status, 2007 vs 2001
Better Reference NS
Worse or about the same 0.9 (0.7–1.1) NS
Reports having SHCN
Yes 1.3 (1.1–1.6) 1.3 (1.03–1.6)
No Reference Reference
Reports any activity limitation
Yes 1.3 (1.0–1.6) NS
No Reference NS
Reports having disability
Yes 1.3 (1.1–1.7) NS
No Reference NS
Reports having personal physician or nurse
Yes 1.5 (1.2–1.8) NS
No Reference NS
Health care communication
Over the past 12 mo, how often did your doctors
spend enough time with you?
Always 1.6 (1.3–1.9) 1.3 (1.03–1.6)
Other Reference Reference
Over the past 12 mo, how often did your doctors
listen carefully to you?*
Always 1.5 (1.3–1.9) 1.3 (1.04–1.6)
Other Reference Reference
Over the past 12 mo, how often did your doctors
help you feel like a partner?*
Always 1.5 (1.2–1.8) NS
Other Reference NS
How often did you get enough information from
your doctors regarding medical problems?*
Always 1.4 (1.1–1.6) NS
Other Reference NS
How often were providers sensitive to family’s
values/customs?
Always 1.2 (1.02–1.5) NS
Other Reference NS
Values are given as odds ratio (95% confidence interval). NS indicates nonsignificant.
e528 SAWICKI et al by guest on January 8, 2016Downloaded from

comes assessed in the SATH survey rep-
resent 3 key processes in health care
transition, they do not completely cap-
ture the complexities of the HCT process
from both a developmental and medical
perspective. Future work is needed to re-
fine and improve both process and out-
come measures for the assessment of
HCT, particularly in higher-risk popula-
tions.
CONCLUSIONS
We report on the first national survey
of young adults to assess their experi-
ences of receiving counseling regard-
ing HCT. Communication and engage-
ment with the health care system were
more strongly linked to receiving HCT
services than sociodemographic and
health status measures. Although fu-
ture work is needed in larger, more
diverse populations, developing a
medical home model that promotes
anticipatory guidance for HCT, includ-
ing provider-youth communication
and incorporates skills assessment
and building for young adults, will pro-
mote improvements in HCT services
and may ultimately improve health out-
comes after transition to adult-
centered care.
ACKNOWLEDGMENTS
We acknowledge the National Center for
Health Statistics and State and Local
Area Integrated Telephone Survey
(SLAITS) for the initial data collection and
administration of the SATH survey. We
also acknowledge Kathy O’Connor, MPH,
at National Center for Health Statistics,
for technical support with the data set.
The authors are responsible for the anal-
ysis, interpretation, and conclusions.
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