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

Abstract

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, behav-ioral, 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). * 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. Parent report of developmental delay in response to NSCH survey questions does not reflect a clinical diagnosis of developmental delay in adolescence. † For example, HRSA MCHB Adolescent and Young Adult programs: https://mchb. hrsa.gov/maternal-child-health-topics/adolescent-and-young-adult-health. 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/hyper-activity 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 § § ; § https://mchb.hrsa.gov/data/national-surveys/data-user. ¶ These categories are not mutually exclusive. ** Four survey items were used to measure the three transition elements: 1) At his or her last preventive checkup , did this child have a chance to speak with a doctor or other health care provider privately, without you or another adult in the room? (Time alone with HCP); 2) Has this child's doctor or other HCP actively worked with this child to a) gain skills to manage his or her health and health care? (e.g., by understanding current health needs, knowing what to do in a medical emergency, or taking medications he or she may need?) or b) understand the changes in health care that happen at age 18 years (e.g., by understanding changes in privacy, consent, access to information, or decision-making) (HCP worked with adolescent); 3) [Has this child's doctor or other HCP] talked with you about having this child eventually see doctors or other HCPs who treat adults? (HCP discussed shift). † † h t t p s : / / m c h b. t v i s d a t a. h r s a. g o v / P r i o r i t i e s A n d M e a s u r e s / NationalPerformanceMeasures. § § The survey item on which this element is based was asked only for adolescents with a preventive visit in the past 12 months. Adolescents with no preventive visit were coded for analyses as not meeting this element.