Support for Transition from Adolescent to Adult Health Care Among Adolescents With and Without Mental, Behavioral, and Developmental Disorders — United States, 2016–2017

Clinical guidelines recommend that primary care providers (PCPs) provide guidance and support to ensure a planned transition from pediatric to adult health care for adolescents, beginning at age 12 years (1). However, most adolescents do not receive the recommended health care transition planning (2). This is particularly concerning for adolescents with diagnosed mental, behavioral, and developmental disorders (MBDDs) (3), who account for approximately 20% of U.S. adolescents (4). Childhood MBDDs are linked to increased long-term morbidity and mortality; timely health care transition planning might mitigate adverse outcomes (5,6). CDC analyzed pooled, parent-reported data from the 2016 and 2017 National Survey of Children’s Health (NSCH), comparing adolescents, aged 12–17 years, with and without MBDDs on a composite measure and specific indicators of recommended health care transition planning by PCPs. Overall, approximately 15% of adolescents received recommended health care transition planning: 15.8% (95% confidence interval [CI] = 14.1%–17.5%) of adolescents with MBDDs, compared with 14.2% (95% CI = 13.2%–15.3%) of adolescents without MBDDs. Relative to peers without MBDDs and after adjusting for age, adolescents with anxiety were 36% more likely to receive recommended health care transition planning, and those with depression were 69% more likely; adolescents with autism spectrum disorder (ASD) were 35% less likely to receive such transition planning, and those with developmental delay* were 25% less likely. Fewer than 20% of adolescents with MBDDs receiving current treatment met the transition measure. These findings suggest that a minority of adolescents with MBDDs receive recommended transition planning, indicating a potential missed public health opportunity to prevent morbidity and mortality in a population at high risk for health care disengagement (1). Improving access to comprehensive and coordinated programs and services,^† as well as increasing provider training concerning adolescents’ unique mental and physical health care needs (7), could help increase the number of adolescents benefiting from successful health care transitions (4).

NSCH, a nationally representative, cross-sectional survey of parents and guardians, is funded and directed by the Health Resources and Services Administration’s Maternal and Child Health Bureau (HRSA MCHB) and conducted by the U.S. Census Bureau.^§ MBDDs were identified based on parents’ affirmative responses to the question “Has a doctor or other health care provider ever told you that this child has (specified disorder)?” and whether the child currently had the MBDD; adolescents with no reported MBDDs constituted the comparison group. MBDDs were categorized as “behavioral disorders” (attention-deficit/hyperactivity disorder [ADHD], behavioral or conduct problems, or Tourette syndrome), “emotional disorders” (anxiety problems or depression), and “developmental disorders” (ASD, learning disability, intellectual disability, developmental delay, or speech or other language disorder).^¶ Parents reported whether each current MBDD was “mild,” “moderate,” or “severe.” Treatment was based on whether 1) the child had taken any medication for emotional, concentration, or behavioral difficulties in the past 12 months or was currently taking medication for ADHD or ASD; or 2) the child was currently receiving behavioral services, such as speech, occupational, or behavioral therapy; treatment or counseling from a mental health professional; or behavioral treatment for ADHD or ASD in the past 12 months.

Consistent with previous research (2,3), a three-element** transition measure aligning with the HRSA MCHB National Performance Measure^†† for health care transition planning was used: 1) any time alone with PCP at last preventive visit^§§; 2) PCP worked with the adolescent to gain health management skills or understand health care changes occurring at age 18 years; and 3) PCP discussed the shift to an adult PCP. Adolescents who met all three elements met the transition measure.

Weighted response rates overall for NSCH were 40.7% for 2016 and 37.4% for 2017.^¶¶ Analyses included 29,286 adolescents aged 12–17 years with data*** for current MBDDs and transition questions. Weighted prevalence estimates for adolescents meeting the transition measure were compared by MBDD status across sociodemographic subgroups using unadjusted prevalence ratios (PRs) and 95% Clopper-Pearson CIs. Prevalences of meeting the transition measure and the three elements were calculated by MBDD status and MBDD category and compared using age-adjusted prevalence ratios (aPRs)^††† and 95% CIs. Analyses were conducted using SAS-callable SUDAAN (version 11.0.3; RTI International) to accommodate the complex sample design and sampling weights.

Overall, 14.6% (95% CI = 13.7%–15.5%) of adolescents met the transition planning measure; 24.2% (95% CI = 23.1%–25.4%) had one or more MBDDs. Meeting the transition measure did not differ significantly by MBDD status (with MBDDs = 15.8%, without MBDDs = 14.2%) (Table 1), but subgroup differences were detected. Adolescents with MBDDs were more likely to meet the transition measure than were those without MBDDs among females (19.0% versus 13.6%), non-Hispanic whites (17.3% versus 14.8%), other non-Hispanic race/ethnicity groups (20.2% versus 13.4%), those with private insurance (17.3% versus 14.4%), and those without insurance (14.8% versus 6.8%). Older adolescents (aged 15–17 years) were more likely than were younger adolescents to meet the transition measure regardless of MBDD status (Supplementary Figure 1, https://stacks.cdc.gov/view/cdc/92137). Adolescents with emotional disorders tended to be older than were adolescents with behavioral or developmental disorders (Supplementary Figure 2, https://stacks.cdc.gov/view/cdc/92137). Adolescents with MBDDs were more likely to have time alone with their PCP at their last preventive visit (aPR = 1.18; 95% CI = 1.10–1.27) and work with their PCP to gain health management skills or understand health care changes occurring at age 18 years (aPR = 1.08; 95% CI = 1.02– 1.13) than were adolescents without MBDDs; however, they were less likely to have discussed the shift to an adult provider with their PCP (PR = 0.90; 95% CI = 0.85–0.96) (Table 2).

The highest percentage of adolescents meeting the transition planning measure was those with emotional disorders (20.4%), specifically depression (26.8%). The lowest percentage of adolescents was those with developmental disorders (12.6%), specifically ASD (8.9%). Among adolescents with MBDDs, neither the presence of two or more co-occurring MBDDs (aPR = 1.07; 95% CI = 0.86–1.33) nor MBDD severity (aPR = 1.01; 95% CI = 0.82–1.25) was associated with meeting the transition planning measure. Adolescents with MBDDs who received treatment were more likely to meet the transition measure than were those with MBDDs who did not receive treatment (aPR = 1.38; 95% CI = 1.09–1.74) (Table 3).

Acknowledgment

Mary Kay Kenny, Health Resources and Services Administration.

Corresponding author: Rebecca T. Leeb, [email protected], 404-498-6752.

¹Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, CDC; ²Division of Birth Defects and Infant Disorders, National Center on Birth Defects and Developmental Disabilities, CDC; ³Oglethorpe University, Atlanta, Georgia; ⁴The Ohio State University College of Medicine, Nationwide Children’s Hospital, Columbus, Ohio; ⁵Maternal and Child Health Bureau, Health Resources and Services Administration, Washington, DC.

References

1. White PH, Cooley WC; Transitions Clinical Report Authoring Group; American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2018;142:e20182587. CrossRef PubMed
2. Lebrun-Harris LA, McManus MA, Ilango SM, et al. Transition planning among US youth with and without special health care needs. Pediatrics 2018;142:e20180194. CrossRef PubMed
3. Zablotsky B, Rast J, Bramlett MD, Shattuck PTJM. Health care transition planning among youth with ASD and other mental, behavioral, and developmental disorders. Matern Child Health J 2020;24:796–804. CrossRef PubMed
4. National Research Council. Investing in the health and well-being of young adults. Washington, DC: The National Academies Press; 2015.
5. National Research Council, Institute of Medicine. Preventing mental, emotional, and behavioral disorders among young people: progress and possibilities. Washington, DC: The National Academies Press; 2009.
6. Colver A, McConachie H, Le Couteur A, et al.; Transition Collaborative Group. A longitudinal, observational study of the features of transitional healthcare associated with better outcomes for young people with long-term conditions. BMC Med 2018;16:111. CrossRef PubMed
7. Alderman EM, Breuner CC; Committee on Adolescence. Unique needs of the adolescent. Pediatrics 2019;144:e20193150. CrossRef PubMed
8. Copeland WE, Shanahan L, Davis M, Burns BJ, Angold A, Costello EJ. Increase in untreated cases of psychiatric disorders during the transition to adulthood. Psychiatr Serv 2015;66:397–403. CrossRef PubMed
9. White PH, Schmidt A, McManus MA, Irwin C. Incorporating health care transition services into preventive care for adolescents and young adults: a toolkit for clinicians. Washington, DC: Got Transition; 2018.
10. American Academy of Pediatrics. Guidelines for health supervision of infants, children, and adolescents. Elk Grove Village, IL: American Academy of Pediatrics; 2017.

Abbreviations: CI = confidence interval; MSA = metropolitan statistical area; PR = prevalence ratio.
* Reference group is adolescents without MBDDs.
^† Residence in or not in an MSA was used as a proxy for urbanicity. Adolescents living in an MSA were considered to be living in an urban or suburban area, and adolescents not living in an MSA were considered to be living in a rural area. The U.S. Census Bureau reviewed the urban/rural status estimates for unauthorized disclosure of confidential information and approved the disclosure avoidance practices applied to the data release (Approval ID CBDRB-FY20-POP001–0053).
^§ The unweighted n for each urbanicity subgroup has been rounded to the nearest hundred to follow U.S. Census Bureau disclosure avoidance practices for data release.
^¶ Estimate does not meet the National Center for Health Statistics standards of precision and should be interpreted with caution. The absolute width of the 95% CI is >30 percentage points and the effective sample size is <30.
** CI of adjusted PR does not include 1.

Abbreviations: ADHD = attention-deficit/hyperactivity disorder; aPR = age-adjusted prevalence ratio; ASD = autism spectrum disorder; CI = confidence interval; PCP = primary health care provider.
* The composite measure of transition planning comprises the three individual elements: Time alone with PCP, PCP worked with adolescent, and PCP discussed shift. If an adolescent met all three elements, they were considered to have met the transition planning measure.
^† Prevalence ratios adjusted for age (aPR); all comparisons using aPRs use the “No MBDD” group as the reference group.
^§ Children with any current MBDDs were identified based on the question “Has a doctor or other health care provider ever told you that this child has (specified disorder)?”; if the parent responded affirmatively, a follow-up question asked whether the child currently had the specified disorder. The “Any MBDD” category included parent report of one or more of the following: anxiety problems, depression, attention-deficit/hyperactivity disorder (ADHD), behavioral or conduct problems, Tourette syndrome, autism spectrum disorder (ASD), learning disability, intellectual disability, developmental delay, and speech or other language disorder. The clinical diagnosis of developmental delay (global developmental delay) is reserved for persons aged <5 years and requires reassessment for another diagnostic determination after a given period of time. Parent report of developmental delay in response to NSCH survey questions does not reflect a clinical diagnosis of developmental delay in adolescence.
^¶ CI does not include 1.
** Individual MBDDs and MBDD categories are not mutually exclusive.
^†† Estimate does not meet National Center for Health Statistics standards of precision and should be interpreted with caution. This percentage has a relative CI width >130%.
^§§ Estimate does not meet National Center for Health Statistics standards of precision and should be interpreted with caution. The absolute width of the 95% CI is >30 percentage points.

Abbreviations: aPR = age adjusted prevalence ratio; CI = confidence interval; PCP = primary health care provider.
* Children with current MBDDs were identified based on the answer to the question “Has a doctor or other health care provider ever told you that this child has (specified disorder)?”; if the parent responded affirmatively, a follow-up question asked whether the child currently had the specified disorder. Any disorder included parent report of one of the following: anxiety problems, depression, attention-deficit/hyperactivity disorder (ADHD), behavioral or conduct problems, Tourette syndrome, autism spectrum disorder (ASD), learning disability, intellectual disability, developmental delay, and speech or other language disorder.
^† For each current MBDD indicated, the parent reported whether the MBDD was “mild,” “moderate,” or “severe.”
^§ Treatment was indicated if the parent reported that the child with an MBDD was currently receiving medication treatment (i.e., medication for ADHD or ASD, or had taken any medication for emotional, concentration, or behavioral difficulties in the past 12 months) or behavioral services (i.e., speech, occupational, or behavioral therapy, treatment or counseling from a mental health professional in the past 12 months, or behavioral treatment for ADHD or ASD in the past 12 months).
^¶ CI does not include 1.