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

(1)

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-relassoci-ated 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.Pediatrics2011;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, andd_{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

(2)

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.5_{However, 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.3_{Youth 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

(3)

any-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 hadⱖ1 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,

(4)

sociode-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 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 aren(%), 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)

(5)

Change in Needs) (adjustedR2_{: 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) (adjustedR2_{: 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) (adjustedR2_:

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 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

(6)

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

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)

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)

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)

Always 1.9 (1.6–2.3) NS

Other Reference NS

(7)

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.3_An

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

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

Yes 1.4 (1.1–1.7) 1.5 (1.2–1.9)

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

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

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

Yes 1.1 (0.8–1.4) NS

No Reference NS

Yes 1.1 (0.9–1.4) NS

No Reference NS

Yes 1.2 (0.9–1.4) NS

No Reference NS

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

Always 1.6 (1.3–2.0) 1.4 (1.1–1.8)

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)

Always 1.3 (1.1–1.6) NS

Other Reference NS

(8)

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

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)

Yes 1.4 (1.1–1.7) 1.4 (1.1–1.8)

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

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

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)

Yes 1.3 (1.0–1.6) NS

No Reference NS

Yes 1.3 (1.1–1.7) NS

No Reference NS

Yes 1.5 (1.2–1.8) NS

No Reference NS

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)

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)

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

Always 1.2 (1.02–1.5) NS

Other Reference NS

(9)

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.

REFERENCES

1. Perrin JM, Bloom SR, Gortmaker SL. The in-crease of childhood chronic conditions in the United States.JAMA. 2007;297(24):2755–2759 2. Lotstein DS, Ghandour R, Cash A, McGuire E,

Strickland B, Newacheck P. Planning for health care transitions: results from the 2005-2006 National Survey of Children With Special Health Care Needs.Pediatrics. 2009; 123(1). Available at: www.pediatrics.org/ cgi/content/full/123/1/e145

3. American Academy of Pediatriacs, American Academy of Family Physicians, American College of Physicians–American Society of Internal Med-icine. A consensus statement on health care transitions for young adults with special health care needs.Pediatrics. 2002;110(6 pt 2): 1304 –1306

4. Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM, Society for Adolescent Medicine. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine.J Adolesc Health. 2003;33(4):309 –311

5. Reiss J, Gibson R. Health care transition: destinations unknown. Pediatrics. 2002; 110(6 pt 2):1307–1314

6. Rosen D. Between two worlds: bridging the cultures of child health and adult medicine.

J Adolesc Health. 1995;17(1):10 –16 7. Rettig P, Athreya BH. Adolescents with

chronic disease. Transition to adult health care.Arthritis Care Res. 1991;4(4):174 –180 8. Salmi J, Huupponen T, Oksa H, Oksala H, Koivula T, Raita P. Metabolic control in adolescent insulin-dependent diabetics referred from pediatric to adult clinic.Ann Clin Res. 1986;18(2):84 – 87 9. Orr DP, Fineberg NS, Gray DL. Glycemic control

and transfer of health care among adolescents with insulin dependent diabetes mellitus.J Ado-lesc Health. 1996;18(1):44 – 47

10. Vanelli M, Caronna S, Adinolﬁ B, Chiari G, Gug-liotta M, Arsenio L. Effectiveness of an uninter-rupted procedure to transfer adolescents with Type 1 diabetes from the Paediatric to the Adult Clinic held in the same hospital: eight-year expe-rience with the Parma protocol.Diabetes Nutr Metabol. 2004;17(5):304 –308

11. Progress toward implementing community-based systems of services for children with special health care needs: summary tables from the National Survey of Children With Spe-cial Health Care Needs, 2005–2006. Available at: www.cdc.gov/nchs/data/slaits/Summary_ tables_NSCSHCN_0506.pdf Accessed Novem-ber 18, 2008

12. Lotstein DS, McPherson M, Strickland B, Newacheck PW. Transition planning for youth with special health care needs: re-sults from the National Survey of Children with Special Health Care Needs.Pediatrics. 2005;115(6):1562–1568

13. Scal P, Ireland M. Addressing transition to adult health care for adolescents with spe-cial health care needs.Pediatrics. 2005; 115(6):1607–1612

14. Kane DJ, Kasehagen L, Punyko J, Carle AC, Penziner A, Thorson S. What factors are as-sociated with state performance on provi-sion of transition services to CSHCN? Pedi-atrics. 2009;124(suppl 4):S375–S383 15. Lotstein DS, Inkelas M, Hays RD, Halfon N, Brook

R. Access to care for youth with special health care needs in the transition to adulthood.J Ado-lesc Health. 2008;43(1):23–29

16. Fulda KG, Lykens K, Bae S, Singh K. Factors for accessing a medical home vary among CSHCN from different levels of socioeconomic status.

Matern Child Health J. 2009;13(4):445– 456 17. Benedict RE. Quality medical homes:

meet-ing children’s needs for therapeutic and

supportive services. Pediatrics. 2008; 121(1). Available at: www.pediatrics.org/ cgi/content/full/121/1/e127

18. State and Local Area Integrated Telephone Sur-vey, Survey of Adult Transition and Health. 2007. Available at: www.cdc.gov/nchs/slaits/sath.htm. Accessed March 1, 2010

19. Cooley WC. Redeﬁning primary pediatric care for children with special health care needs: the primary care medical home.

Curr Opin Pediatr. 2004;16(6):689 – 692 20. Strickland B, McPherson M, Weissman G, van

Dyck P, Huang ZJ, Newacheck P. Access to the medical home: results of the National Survey of Children with Special Health Care Needs. Pediat-rics. 2004;113(5 suppl):1485–1492

21. Blumberg SJ, Welch EM, Chowdhury SR, Up-church HL, Parker EK, Skalland BJ. Design and operation of the National Survey of Chil-dren with Special Health Care Needs, 2005-2006.Vital Health Stat. 2008;(45):1–188 22. McManus M, Fox H, O’Connor K, Chapman T,

MacKinnon J. Pediatric Perspectives and Prac-tices on Transitioning Adolescents with Special Needs to Adult Health Care. 2008. Available at: www.thenationalalliance.org/jan07/factsheet6. pdf. Accessed August 18, 2010

23. Newacheck PW, Hung YY, Park MJ, Brindis CD, Irwin CE Jr. Disparities in adolescent health and health care: does socioeconomic status matter?

Health Serv Res. 2003;38(5):1235–1252 24. Duke NN, Scal PB. Adult care transitioning for

ad-olescents with special health care needs: a piv-otal role for family centered care.Matern Child Health J. 2011;15(1):98 –105

(10)

DOI: 10.1542/peds.2010-3017 originally published online August 8, 2011;

2011;128;e521

Pediatrics

Lukens-Bull and David Wood

Gregory S. Sawicki, Ruth Whitworth, Laura Gunn, Ryan Butterfield, Katryne

Transition and Health

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

Services

Updated Information &

http://pediatrics.aappublications.org/content/128/3/e521

including high resolution figures, can be found at:

References

http://pediatrics.aappublications.org/content/128/3/e521#BIBL

This article cites 19 articles, 5 of which you can access for free at:

Subspecialty Collections

nsition_-_discharge_planning_sub

http://www.aappublications.org/cgi/collection/continuity_of_care_tra

Continuity of Care Transition & Discharge Planning

http://www.aappublications.org/cgi/collection/hospital_medicine_sub

Hospital Medicine

following collection(s):

This article, along with others on similar topics, appears in the

Permissions & Licensing

http://www.aappublications.org/site/misc/Permissions.xhtml

in its entirety can be found online at:

Information about reproducing this article in parts (figures, tables) or

Reprints

http://www.aappublications.org/site/misc/reprints.xhtml

(11)

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

Receipt of Health Care Transition Counseling in the

National Survey of Adult Transition and Health

abstract