Preparation for Transition to Adult Care Among Medicaid-Insured Adolescents
BACKGROUND: Parents of children with chronic illness consistently report suboptimal preparation for transition from pediatric- to adult-focused health care. Little data are available on transition preparation for low-income youth in particular.
METHODS: We conducted a mailed survey of youth with chronic illness enrolled in 2 large Medicaid health plans to determine the quality of transition preparation using the Adolescent Assessment of Preparation for Transition (ADAPT). ADAPT is a new 26-item survey designed for 16- to 17-year-old youth to report on the quality of health care transition preparation they received from medical providers. ADAPT generates composite scores (possible range: 0%–100%) in 3 domains: counseling on transition self-management, counseling on prescription medication, and transfer planning. We examined differences in ADAPT scores based on clinical and demographic characteristics.
RESULTS: Among 780 and 575 respondents enrolled in the 2 health plans, respectively, scores in all domains reflected deficiencies in transition preparation. The highest scores were observed in counseling on prescription medication (57% and 58% in the 2 plans, respectively), and lower scores were seen for counseling on transition self-management (36% and 30%, respectively) and transfer planning (5% and 4%, respectively). There were no significant differences in composite scores by health plan, sex, or type of chronic health condition.
CONCLUSIONS: The ADAPT survey, a novel youth-reported patient experience measure, documented substantial gaps in the quality of transition preparation for adolescents with chronic health conditions in 2 diverse Medicaid populations.
- ADAPT —
- Adolescent Assessment of Preparation for Transition
- C-CD —
- complex chronic disease
- CSHCN —
- children with special health care needs
- HCT —
- health care transition
- NC-CD —
- noncomplex chronic disease
- NS-CSHCN —
- National Survey of Children with Special Health Care Needs
- PMCA —
- pediatric medical complexity algorithm
What’s Known on This Subject:
Young adults and parents of children with chronic illness consistently report suboptimal preparation for transition from pediatric- to adult-focused health care. No validated tool has provided the perspective of adolescents on their own experience of transition preparation.
What This Study Adds:
The Adolescent Assessment of Preparation for Transition, a youth-report patient experience survey, identifies substantial gaps in the quality of transition preparation for adolescents with chronic health conditions in Medicaid populations.
Health care transition (HCT) is the process through which youth are expected to achieve the skills necessary to manage their health as adults. Optimal HCT generally involves transition preparation, gradual adoption of an adult-focused health care model within pediatric care, and intake to an adult-focused health system for those who transfer providers.1,2 A clinical report from the American Academy of Pediatrics, American Academy of Family Physicians, and the American College of Physicians recommends that transition preparation start early in adolescence and involve care coordination and planning for uninterrupted, developmentally appropriate health care services into adulthood.1 However, surveys of nationally representative parent samples, including the National Survey of Children with Special Health Care Needs (NS-CSHCN), have highlighted the reality of limited attention to HCT in repeated surveys over the last decade.3–5 Although all adolescents undergo HCT, those particularly vulnerable to adverse health outcomes include those with chronic health conditions.6 For example, young adults with diabetes who felt unprepared for transition had an increased likelihood of a gap in care >6 months when they moved from pediatric to adult care compared with those who felt more prepared.7 Underserved youth from low socioeconomic backgrounds face additional barriers during HCT at the patient/family and health system level, including heightened risk of loss of health insurance during young adulthood and worse access to specialty care.8,9 Ultimately, poor quality HCT preparation for at-risk youth may contribute to worse health outcomes due to discontinuity in health care services.6
Consensus statements recommend that transition preparation should focus on improved youth-provider communication, acquisition of self-care skills, development of transition care plans, and promotion of increased responsibility for chronic condition management.1,10 Examples of important transition-readiness skills include scheduling one’s own medical appointments, obtaining medications and prescription refills, understanding health insurance coverage, and feeling empowered to manage one’s own medical condition.11–14 Such self-management skills need to be acquired by all adolescents even if transfer of care to a new provider is not necessary.
Previous research has evaluated parent, youth, and young adult patient perspectives on transition in individuals with cystic fibrosis, congenital heart disease, diabetes, inflammatory bowel disease, rheumatologic disease, and sickle cell disease, as well as those with multiple complex chronic conditions.8,15–20 Most of these studies, as well as broader national surveys of youth with special health care needs, consistently identify significant deficiencies in transition preparation across populations.3–5,21 Because transition preparation includes a series of interactions with clinicians, many of which may be unwitnessed by parents, directly measuring the experience of adolescents, particularly those at highest risk for poor outcomes, is critical to understanding current deficiencies and improving health care delivery.
The Adolescent Assessment of Preparation for Transition (ADAPT) survey has been developed as a self-reported instrument designed for youth with chronic health conditions.22 The survey design, national field testing protocol, and validation of the ADAPT instrument has been previously described.22 In this paper, we report the results of the ADAPT survey in its implementation with 2 Medicaid-insured populations of adolescents with chronic health conditions. Given that consensus recommendations for transition preparation identify 14 to 15 years as the ideal age to initiate the development of a patient-specific transition plan, we sought to describe preparation at 16 to 17 years of age, by which time some transition preparation should certainly have occurred. By focusing on the HCT experiences of Medicaid-insured populations, we were able to examine HCT experiences in an often underresourced, highly vulnerable patient population.
As previously described, the ADAPT survey was administered via mail to populations of adolescents with chronic health conditions enrolled in 1 of 2 Medicaid managed care health plans.22 Health plan 1 serves individuals across 2 regions in Pennsylvania, and health plan 2 is a pediatric-focused plan serving individuals in Texas. Both plans serve a predominantly urban and suburban patient population. Each health plan mailed 3000 surveys to a random sample of eligible members with at least 1 outpatient administrative claim in the 12 months before the study.
Survey recipients were identified as having a chronic health condition by analysis of health plan claims by using the pediatric medical complexity algorithm (PMCA).23 This publicly available algorithm uses International Classification of Diseases, Ninth Revision, Clinical Modification diagnosis codes in health plan claims to identify youth with either a complex chronic disease (C-CD) or noncomplex chronic disease (NC-CD). Youth with NC-CD have a health condition affecting only 1 body system (eg, diabetes, asthma), whereas those with C-CD have >1 body system involved or have a progressive disease associated with deteriorating health with a decreased life expectancy in adulthood (eg, muscular dystrophy, cystic fibrosis, malignancy, quadriplegia). For each health plan, mailed surveys were divided evenly between those identified as having a C-CD and NC-CD. Using claims data, we identified the providers associated for the most office visits during the 12 months before the study. Up to 3 names of such providers were included on the survey as choices for the respondents’ main provider.
Because of health plan policies regarding direct contact with minors, the survey was mailed to the parent or guardian of the identified adolescent with a cover letter asking them to provide the survey to the adolescent to complete. After ∼30 days, a second survey packet was sent to nonrespondents. Respondents received an incentive of a $10 gift card for completing the survey. The study was approved by institutional review boards at each of the health plans and Boston Children’s Hospital.
The ADAPT survey is a 26-item youth-reported survey of the quality of HCT preparation completed by 16- and 17-year-old adolescents with at least 1 chronic health condition. The survey asks respondents to identify their main health care provider and then report on whether specific, recommended aspects of transition preparation were received from this provider over the past year. The ADAPT survey includes questions in 3 key domains of HCT preparation: (1) counseling on transition self-management; (2) counseling on prescription medication; and (3) transfer planning. The ADAPT survey also includes screener questions and questions on respondents’ frequency of visits to their identified main health care provider, self-reported health status (excellent, very good, good, fair poor), as well as key demographic characteristics (age, sex, education, race/ethnicity).
Validation of English and Spanish versions of the ADAPT survey has been previously described.22 The survey was developed by using a standard framework involving a literature review, focus groups, cognitive interviews, and field testing. It was extensively tested to ensure that the topics included are those on which youth can reliably and validly report and for which they are generally the best source of information. Ordinal reliability coefficients showed generally good internal consistency (ordinal α >.7). Confirmatory factor analysis supported the use of the survey’s predefined constructs for composite score development.
Composite scores for the ADAPT survey were calculated for 3 domains, each incorporating multiple individual questions. The 3 composites in the ADAPT survey are: composite 1: counseling on transition self-management; composite 2: counseling on prescription medication; and composite 3: transfer planning. For each respondent, the proportion of positive responses is calculated as the number of questions within the domain with a positive response divided by the number of questions in the domain. For composite 1, scores are calculated for respondents with valid responses to all 5 questions within the domain. Composites 2 and 3 both contain skip patterns. For composite 2, scores are calculated for respondents who report taking prescription medicine and have valid responses to all of the other questions within the domain. The number of relevant items varies according to whether the patient reported taking daily medication. Scores for composite 3 are only calculated for those who report that their main provider treated mostly children, and thus would require transfer of care to a different provider in adulthood. For aggregation to the health plan level, each composite score is the average proportion of positive responses among those with valid responses to all questions within the domain.
A case-mix adjustment model was developed for each composite using linear regression models, with all scores adjusted for self-reported health status and age.24,25 Each composite is scored at the population-level with a possible range of 0% to 100%, where 100% indicates respondents selected the most positive response for all questions in the domain. We compared health plan–level scores using t tests based on the case-mix adjustment model estimates. Population composite scores were compared based on sex, health plan, and type of chronic condition.
We received 1355 surveys (780 from health plan 1 and 575 from health plan 2; response rates of 28% and 21%, respectively).
The demographic characteristics for the samples in both health plans are presented in Table 1. Among respondents with identified NC-CDs, the largest percentage had respiratory disease, followed by musculoskeletal, neurologic, and endocrinologic conditions. For those with C-CDs, the same body system categories were also common. In the respondents with C-CDs, 45% and 68% had progressive disease, and 43% and 29% had evidence of a mental health comorbidity (Table 1).
The rates of positive responses to the individual ADAPT transition preparation items differed in the 2 samples (Table 2). For example, among the transition self-management questions, only 52% in health plan 1 and 33% in health plan 2 reported that they had talked with their health care provider without a parent or guardian in the room. Over half of the adolescents in both samples (61% and 56%, respectively) reported that their provider had talked with them about being more in charge of their health. Only a minority in each sample reported having talked about scheduling appointments (16% and 19%) or health insurance changes (7% and 11%) with their provider. A higher percentage of respondents reported having talked with their provider about their prescription medicine (83% and 86%) and remembering to take their medicine (73% and 76%). However, in both samples, only 15% of respondents reported talking with their provider about refilling their prescription medicines. The lowest rates of positive responses were to the ADAPT questions on transfer planning. Few of the eligible respondents in each sample reported that they had talked with their provider about whether they would need to change to a new provider who treats mostly adults (11% and 10%, respectively), and only 4% in both samples reported that they had talked about a specific plan for transition with their provider.
Case-mix adjusted ADAPT composite scores (Fig 1) were generally low in both health plans, reflecting deficits in all aspects of transition preparation. The highest scores were for counseling on prescription medication (57% and 58%), and the lowest scores were for transfer planning (5% and 4%). Although respondents from health plan 1 had a higher score for counseling on transition self-management (36% vs 30%, P < .001) compared with health plan 2, no significant differences were detected in the population scores across the 2 samples in the other 2 composite scores. In both health plans, there were no significant differences in ADAPT scores based on respondent sex and type of PMCA-identified chronic condition. An additional analysis in both samples within the C-CD group showed no significant difference in ADAPT scores based on the presence of a mental health comorbidity.
As more adolescents with pediatric-onset chronic diseases survive into adulthood, there is an increased need to appropriately prepare youth for transition from pediatric to adult-focused health care. This is especially true for populations at highest risk for poor outcomes, including low-income youth with chronic illnesses. Such youth may have increased challenges with educational and vocational milestones, social support, and have heightened risk for loss of health insurance coverage and access to specialty care in early adulthood. Because effective transition preparation requires productive interactions with health care providers to support the development of specific skills, direct report of patients’ experiences with transition preparation is essential to assess and improve quality of HCT care. In this study, we administered the ADAPT survey, a validated, youth-reported, non–condition-specific survey, in 2 large Medicaid-insured samples of youth with chronic health conditions and found major deficiencies in reports of HCT preparation across all ADAPT domains: self-management, prescription medications, and planning for transfer of care, regardless of geographic location, sex, or type of chronic condition.
Consensus statements on HCT recommend that health care providers prepare patients by discussing realistic goals and developing a transition plan starting at age 14 years.1,26 Other recommended aspects of transition preparation include development of self-management skills, improved youth-provider communication, and skills for self-advocacy. Many of these aspects of care are evaluated in the ADAPT survey, and, based on our data, it is clear that major deficiencies in transition planning exist for adolescents with varied chronic health conditions despite these long-standing recommendations. Overall, our results are in line with suboptimal rates of transition preparation reported by parents and young adults in samples such as the NS-CSHCN.3–5 In multiple administrations of the NS-CSHCN over the past decade, only a minority of parents reported having a plan addressing transition needs. Similarly, in the 2007 Survey of Adolescent Transition and Health, which targeted young adults 19 to 23 years of age, a minority of respondents reported receiving counseling regarding transition.21 Our current data indicate a similar deficiency in transition preparation for Medicaid-insured adolescents. These deficiencies were present in both samples, despite variation in demographic characteristics, and did not vary based on individual respondent attributes. Fundamentally, these low ADAPT scores identify multiple areas for continued intervention to improve HCT care for Medicaid-insured youth.
In our study, an extremely small percentage of the surveyed population reported having discussed a transition plan. Higher scores in the ADAPT composites of counseling on self-management and prescription medication suggest that health care providers are initiating discussions related to daily chronic disease care with patients, but not reliably discussing planning for future health care needs. The ADAPT survey allows for ongoing measurement of the quality of transition preparation from a patient perspective. Other quality indicators could collect data from a provider perspective, perhaps through electronic medical records. Measures from multiple perspectives will allow health plans, practices, and providers to measure the effectiveness of their transition-related care as they design and improve these services. Addressing deficiencies in transition preparation in high-risk, low-income populations, such as those included in this study, is likely to improve health outcomes during young adulthood for populations already known to have significant barriers to accessing health insurance coverage and specialty care.9
Our study has several limitations. Although the response rate was low, our response rates are comparable to other adolescent health care delivery survey studies27 and to response rates obtained by similar patient experience quality measures.24,28 The ADAPT survey does not assess all recommendations regarding HCT preparation, particularly those that cannot be evaluated by adolescent self-report, such as whether a practice-level transition policy exists. However, adolescents are the only source of information regarding some aspects of HCT preparation, especially those that are not documented in the medical record. In fact, other research among adolescents has indicated that youth self-report is reliable in the evaluation of health service delivery.27,29 The ADAPT survey also does not identify whether transition preparation services were provided by other members of a clinical care team because it focuses on the adolescent’s interaction with a main provider. Because the survey was mailed to any eligible youth with at least 1 administrative claim over a 1-year period, some respondents may have had less contact with their providers than others. Although this could bias a sample toward a healthier group of adolescents, transition preparation services should be provided to all youth, regardless of frequency of contact with the health care system. Additionally, although the ADAPT survey is written at a sixth-grade reading level, the survey is not appropriate to assess HCT preparation for adolescents who have cognitive or intellectual disabilities or developmental delays; in the future, the ADAPT survey could be modified to elicit responses from proxy respondents about care for these patient populations. Finally, the ADAPT survey does not provide an assessment of processes related to transfer of care to an adult-focused health system (eg, transfer of medical records, receipt of medical records by an adult provider, time to first visit with an adult provider), nor does it assess care for youth who have already transferred care to an adult-focused provider.
Improving transition preparation for youth with chronic conditions is a critical priority for pediatric health care systems. The suboptimal scores in all ADAPT survey composite scores among youth enrolled in Medicaid health plans identify substantial deficiencies in the quality of transition preparation in already at-risk patient populations. These deficiencies are present despite multiple national clinical guidelines for HCT care.1
The findings of our study underscore the need for more attention to purposeful transition planning across the spectrum of pediatric chronic conditions, particularly given the decreasing adherence to self-care and increased risk for fragmentation of care and poor outcomes that has been observed among transitioning young adults.6 Based on recommendations from the clinical report on transition,1 the “Six Core Elements” for transition have been developed and implemented in primary and specialty care practices.2,30 At the practice-level, these components include developing a transition policy, establishing a transition registry, evaluating transition readiness, and implementing processes for transition planning, transfer of care, and transfer completion. The ADAPT survey complements these efforts by providing a simple, youth-reported measure of transition preparation. However, beyond the establishment of policies and assessment tools, interventions in clinical practice designed to improve transition preparation for high-risk youth with chronic disease are still clearly needed. These interventions could include introduction of transition care coordinators within a practice, technology-based tools to facilitate acquisition of knowledge and skills, and dedicated clinician-led trainings for at-risk youth. At this time, unfortunately, there is little evidence supporting the effectiveness of any particular transition intervention,31 and longitudinal studies linking such efforts to successful transfer and later health outcomes would be valuable.
We thank the staff of the Center of Excellence for Pediatric Quality Measurement at Boston Children’s Hospital, members of the Center of Excellence for Pediatric Quality Measurement Scientific Advisory Board and National Stakeholder Panel, members of the Massachusetts Child Health Quality Coalition, and members of the Boston Children’s Hospital Teen Advisory Council. We also thank our collaborators at the Center for Survey Research (Jessica Leblanc, MA, and Carol Cosenza, MSW), AmeriHealth Caritas Health Plan (Wanzhen Gao, MD, PhD, and Susan Tan-Torres, MD, MPH), and Texas Children’s Health Plan (Xuan G. Tran, MHA, and Christopher C. Williams, MS, MBA), the participants in our focus groups, cognitive interviews, and field tests, and all others who contributed to the development and testing of the ADAPT.
- Accepted March 24, 2017.
- Address correspondence to Gregory S. Sawicki, MD, MPH, Division of Respiratory Diseases, Boston Children’s Hospital, 300 Longwood Ave, Boston, MA 02115. E-mail:
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: This work was supported by the US Department of Health and Human Services Agency for Healthcare Research and Quality and Centers for Medicare & Medicaid Services, Children's Health Insurance Program Reauthorization Act Pediatric Quality Measures Program Centers of Excellence under grant U18 HS 020513. Dr Sawicki is also supported by grant K23HL105541 from the National Heart, Lung, Blood Institute, National Institutes of Health. Dr Garvey’s work on this study was also supported by the National Institute for Diabetes and Digestive and Kidney Diseases, National Institutes of Health (grant K23DK102655). Funded by the National Institutes of Health (NIH).
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
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- Copyright © 2017 by the American Academy of Pediatrics