Long-term implications of structured transition of adolescents with inflammatory bowel disease into adult health care: a retrospective study.

BACKGROUND: We aimed to evaluate the long-term clinical and socioeconomic outcome of structured transition care in adolescents with inflammatory bowel disease (IBD). METHODS: We compared the clinical long-term course of 24 patients with and 11 patients without structured transition care within 24 months before and 24 months after transfer from paediatric to adult health care. Socio-economic parameters and quality of life were assessed by IBD Questionnaire (IBDQ-32) and additional items. Treatment costs were calculated for medication, surgery and hospitalisation. RESULTS: The percentage of transfer group patients with an IBD-related intestinal complication was higher compared to the transition group (64% vs. 21%, p = 0.022). We also found a tendency towards a higher number of IBD-related surgery in the transfer group compared to the transition group (46% vs. 13%, p = 0.077). Transfer group patients received higher mean cumulated doses of radiation compared with the transition group (4.2 ± 5.3 mSv vs. 0.01 ± 0.01 mSv, p = 0.036). Delayed puberty was only noted in the transfer group (27%, p = 0.025). Mean expenditures for surgeries and hospitalisation tended to be lower in the transition group compared to transfer group patients (744 ± 630€ vs. 2,691 ± 4,150€, p = 0.050). Sexual life satisfaction was significantly higher (p = 0.023) and rates of loose bowel movements tended to be lower (p = 0.053) in the transition group. CONCLUSIONS: Structured transition of adolescents with IBD from paediatric into adult health care can lead to important clinical and economic benefits.

The evaluation and costs of transition programs for youth with epilepsy.

There is limited information about the effectiveness of transition programs for youth moving from pediatric to adult care with any chronic disease. Two Delphi studies and National Institute for Health and Care Excellence (NICE) guidelines about transition for epilepsy have suggested few critical outcome measures for transition. A single large prospective study found that the most important transition program elements were appropriate parent involvement, promotion of health self-efficacy, and meeting the adult team before transfer. Two Cochrane reviews of the value of transition for epilepsy found insufficient evidence to establish or refute the value of various programs, although evaluation of a few programs suggested a great deal of family/patient satisfaction. The cost of transition programs and their cost effectiveness have also not been established except for renal transplantation where transition programs were associated with fewer losses of the transplanted kidneys, a cost-effective outcome. Published data on the overall cost of care for children and adults with epilepsy may be helpful to establish a business plan for a transition program, and are briefly reviewed. Establishing cost effectiveness of transition programs for epilepsy would promote their establishment and viability. However, a number of studies will be needed based on the nature of the program, the healthcare system where it is carried out, and the type of epilepsy. In fee-for-service health systems, the reevaluation of patients with epilepsy prior to transfer may be sufficient to cover the costs of the transition program, whereas in single payer systems, there may be positive downstream health or societal benefits that justify the costs. A theoretical framework for comprehensive evaluation of epilepsy transition programs is needed. The Triple Aim Framework seems applicable with focus on population health, patient experiences, and cost and has the potential to assess transition interventions in the context of system-wide improvements in healthcare. Transition programs in general have not been well evaluated, and very little evaluation data exist regarding transition programs for epilepsy. We recommend more evaluative research using rigorous methodology to comprehensively assess these programs.

Protocol for a cohort study of adolescent mental health service users with a nested cluster randomised controlled trial to assess the clinical and cost-effectiveness of managed transition in improving transitions from child to adult mental health services (the MILESTONE study).

INTRODUCTION: Disruption of care during transition from child and adolescent mental health services (CAMHS) to adult mental health services may adversely affect the health and well-being of service users. The MILESTONE (Managing the Link and Strengthening Transition from Child to Adult Mental Healthcare) study evaluates the longitudinal course and outcomes of adolescents approaching the transition boundary (TB) of their CAMHS and determines the effectiveness of the model of managed transition in improving outcomes, compared with usual care. METHODS AND ANALYSIS: This is a cohort study with a nested cluster randomised controlled trial. Recruited CAMHS have been randomised to provide either (1) managed transition using the Transition Readiness and Appropriateness Measure score summary as a decision aid, or (2) usual care for young people reaching the TB. Participants are young people within 1 year of reaching the TB of their CAMHS in eight European countries; one parent/carer and a CAMHS clinician for each recruited young person; and adult mental health clinician or other community-based care provider, if young person transitions. The primary outcome is Health of the Nation Outcome Scale for Children and Adolescents (HoNOSCA) measuring health and social functioning at 15 months postintervention. The secondary outcomes include mental health, quality of life, transition experience and healthcare usage assessed at 9, 15 and 24 months postintervention. With a mean cluster size of 21, a total of 840 participants randomised in a 1:2 intervention to control are required, providing 89% power to detect a difference in HoNOSCA score of 0.30 SD. The addition of 210 recruits for the cohort study ensures sufficient power for studying predictors, resulting in 1050 participants and an approximate 1:3 randomisation. ETHICS AND DISSEMINATION: The study protocol was approved by the UK National Research Ethics Service (15/WM/0052) and equivalent ethics boards in participating countries. Results will be reported at conferences, in peer-reviewed publications and to all relevant stakeholder groups. TRIAL REGISTRATION NUMBER: ISRCTN83240263; NCT03013595 (pre-results).

Spending on Hospital Care and Pediatric Psychology Service Use Among Adolescents and Young Adults With Cancer.

Objective: To examine the relationship between need-based pediatric psychology service use and spending on hospital care among adolescents and young adults (AYAs) with cancer. Methods: Billing data were obtained from 48 AYAs with cancer receiving need-based pediatric psychology services and a comparison cohort of 48 AYAs with cancer not receiving services. A factorial analysis of covariance examined group differences in spending for hospital care. Pending significant findings, a multivariate analysis of covariance was planned to examine the relationship between need-based pediatric psychology service use and spending for inpatient admissions, emergency department (ED) visits, and outpatient visits. Results: Spending for hospital care was higher among AYAs receiving need-based pediatric psychology services than in the comparison cohort (p < .001, ωPartial2 = .11). Group differences were driven by significantly higher spending for inpatient admissions and ED visits among AYAs receiving need-based pediatric psychology services. Conclusions: The behavioral and psychosocial difficulties warranting need-based pediatric psychology services may predict higher health care spending.

Insurance Among Young Adults With Inflammatory Bowel Disease: Changes Under the Affordable Care Act Dependent Provision.

BACKGROUND: A total of 20% to 30% of patients with inflammatory bowel disease (IBD) present before age 18 years, eventually requiring transfer to adult care. Vulnerability during transfer may be exacerbated by loss of insurance. A provision of the Affordable Care Act (ACA) allows young adults (YAs) to remain on parental private insurance through age 25 years. There has been a decrease in uninsured YAs since its implementation in 2010. Little is known about whether insurance coverage of YAs with IBD has been affected. OBJECTIVE: The aim of the present study was to determine whether the proportion of uninsured YAs with IBD has changed following the implementation of extended dependent eligibility under the ACA. METHODS: We conducted a cross-sectional analysis of hospitalized patients with IBD, identified in the Nationwide Inpatient Sample (NIS) using diagnostic codes, to estimate proportions of insurance coverage during the years 2006-2013. We compared 19 to 25 year olds to 2 to 18 and 26 to 35 year olds, unaffected by the provision, to account for underlying trends. RESULTS: From 2006 to 2010, 19 to 25 year olds had the highest proportion of uninsured, peaking at 14.1% in 2010. In 2011, the proportion decreased to 10.1%, below the proportion of uninsured 26 to 35 year olds (13.1%), remaining in this range through 2013. Private coverage increased in 2011 for 19 to 25 year olds, remaining stable for 26 to 35 year olds. DISCUSSION: Previous research cited 5% uninsured among all hospitalized patients with IBD. Our study indicates a higher proportion for YAs, decreasing after the ACA. Lack of insurance increases vulnerability during transfer but may be modifiable through policy change. Furthermore, research should analyze the effects of Medicaid expansion and health care exchanges.

Health Care Use During Transfer to Adult Care Among Youth With Chronic Conditions.

OBJECTIVE: To compare health care use and costs for youth with chronic health conditions before and after transfer from pediatric to adult health care services. METHODS: Youth born in Ontario, Canada, between April 1, 1989, and April 1, 1993, were assigned to 11 mutually exclusive, hierarchically arranged clinical groupings, including "complex" chronic conditions (CCCs), non-complex chronic conditions (N-CCCs), and chronic mental health conditions (CMHCs). Outcomes were compared between 2-year periods before and after transfer of pediatric services, the subjects' 18th birthday. RESULTS: Among 104,497 youth, mortality was highest in those with CCCs, but did not increase after transfer (1.3% vs 1.5%, P = .55). Costs were highest among youth with CCCs and decreased after transfer (before and after median [interquartile range]: $4626 [1253-21,435] vs $3733 [950-16,841], P < .001);Costs increased slightly for N-CCCs ($569 [263-1246] vs $589 [262-1333], P < .001), and decreased for CMHCs ($1774 [659-5977] vs $1545 [529-5128], P < .001). Emergency department visits increased only among youth with N-CCCs (P < .001). High-acuity emergency department visits increased CCCs (P = .04) and N-CCCs (P < .001), but not for CMHC (P = .59), who had the highest visit rate. Among the 11 individual conditions, costs only increased in youth with asthma (P < .001), and decreased (P < .05) in those with neurologic impairment, lupus, inflammatory bowel disease, and mood/affective disorders. CONCLUSIONS: Pediatric transfer to adult care is characterized by relatively stable short-term patterns of health service use and costs among youth with chronic conditions.

Transitional care in solid organ transplantation.

Pediatric solid organ transplantation has become an accepted modality of treatment in the last few decades. The number of childhood recipients of solid organ transplantation surviving to adulthood is correspondingly rising. This review examines the epidemiology of pediatric solid organ transplant recipients, and the challenges faced during transition to adult services, with suggestions for improvement in collaborative and coordinated care. Transition to adulthood has been established as a vulnerable period for recipients of a solid organ transplant. Assessment of readiness for transfer, allowing sufficient time for preparation before the actual transfer, involvement of all stakeholders, and inclusion of a transition coordinator are some of the components that can facilitate successful transition to the adult transplant program. This programmatic approach improves both quality of life and long-term graft and patient survival. Moreover, the economic benefits associated with avoiding frequent hospitalizations for graft dysfunction and preventing re-transplantation more than compensate for the costs related to establishing and maintaining a robust transition program.

Measuring the "triple aim" in transition care: a systematic review.

BACKGROUND AND OBJECTIVES: Without adequate support, adolescents transitioning from the pediatric to the adult health care system are at increased risk for poor health outcomes. Numerous interventions attempt to improve this transition, yet few comprehensively evaluate efficacy. To advance evaluation methods and ultimately the quality of transition services, it is necessary to understand the current state of health care transition measurement. This study examines and categorizes transition measures by using the "Triple Aim" framework of experience of care, population health, and cost of care. METHODS: Ovid Medline and the Cumulative Index to Nursing and Allied Health Literature were searched for articles published between 1995 and 2013. Two reviewers independently screened studies and included those that evaluated the impact of a health care transition intervention. Measures were subsequently classified according to population health, experience of care, and costs of care. RESULTS: Of the 2282 studies initially identified, 33 met inclusion criteria. Population health measures were used in 27 studies, with disease-specific measures collected most frequently. Fifteen studies measured cost, most often service utilization. Eight studies measured experience of care, with satisfaction assessed most commonly. Only 3 studies examined all 3 domains of the "Triple Aim." Transition interventions described in the gray literature were not reviewed. CONCLUSIONS: Transition programs are inconsistently evaluated in terms of their impact on population health, patient experience, and cost. To demonstrate improvement in the transition from pediatric to adult health care, a more robust and consistent set of measures is needed.

Federal and state benefits for transition age youth.

While all children face challenges as they become adults, children with chronic medical conditions or disabilities face unique barriers in their transition to adulthood. Children, especially those who are low income and have special needs, are eligible for a range of supports including income supports, health care coverage, vocational and educational supports. These supports are critical to sound health because they ensure access to necessary medical services, while also offsetting the social determinants that negatively affect health. Unfortunately, as children transition into adulthood, eligibility for these benefits can change abruptly or even end entirely. If medical providers have a better understanding of five transition key dates, they can positively impact their patients' health by ensuring continuous coverage through the transition to adulthood. The key dates are as follows: (1) transition services for students with an Individualized Education Program (IEP) must begin by age 16 (in some states such as Illinois, these services must be in place by age 14 1/2); (2) at age 18, eligibility for income supports may change; (3) at age 19, eligibility for Medicaid may change; (4) at graduation, eligibility for educational supports will end unless steps are taken to extend those benefits until age 22; and (5) when individuals prepare to enter the workforce, they will become eligible for vocational rehabilitation services. With an understanding of these key transition dates and how to partner with social services and advocacy organizations on behalf of their patients, medical providers can help to ensure that transition-age patients retain the holistic social services and supports they need to protect their health.

Preparing adolescents with chronic disease for transition to adult care: a technology program.

BACKGROUND: Adolescents with chronic disease (ACD) must develop independent disease self-management and learn to communicate effectively with their health care team to transition from pediatric to adult-oriented health care systems. Disease-specific interventions have been implemented to aid specific ACD groups through transition. A generic approach might be effective and cost-saving. METHODS: Eighty-one ACD, aged 12 to 20 years, were recruited for a randomized clinical trial evaluating an 8-month transition intervention (MD2Me). MD2Me recipients received a 2-month intensive Web-based and text-delivered disease management and skill-based intervention followed by a 6-month review period. MD2Me recipients also had access to a texting algorithm for disease assessment and health care team contact. The intervention was applicable to adolescents with diverse chronic illnesses. Controls received mailed materials on general health topics. Disease management, health-related self-efficacy, and health assessments were performed at baseline and at 2 and 8 months. Frequency of patient-initiated communications was recorded over the study period. Outcomes were analyzed according to assigned treatment group over time. RESULTS: MD2Me recipients demonstrated significant improvements in performance of disease management tasks, health-related self-efficacy, and patient-initiated communications compared with controls. CONCLUSIONS: Outcomes in ACD improved significantly among recipients of a generic, technology-based intervention. Technology can deliver transition interventions to adolescents with diverse chronic illnesses, and a generic approach offers a cost-effective means of positively influencing transition outcomes. Further research is needed to determine whether improved short-term outcomes translate into an improved transition for ACD.

Transition care: future directions in education, health policy, and outcomes research.

All youth must transition from pediatric to adult-centered medical care. This process is especially difficult for youth with special health care needs. Many youth do not receive the age-appropriate medical care they need and are at risk during this vulnerable time. Previous research has identified barriers that may prevent effective transition, and protocols have been developed to improve the process. Health outcomes related to successful transition have yet to be fully defined. Health care transition can also be influenced by education of providers, but there are gaps in medical education at the undergraduate, graduate, and postgraduate levels. Current changes in federal health policy allow improved health care coverage, provide some new financial incentives, and test new structures for transitional care, including the evolution of accountable care organizations (ACO). Future work must test how these systems changes will affect quality of care. Finally, transition protocols exist in various medical subspecialties; however, national survey results show no improvement in transition readiness, and there are no consistent measures of what constitutes transition success. In order to advance the field of transition, research must be done to integrate transition curricula at the undergraduate, graduate, and postgraduate levels; to provide advance financial incentives and pilot the ACO model in centers providing care to youth during transition; to define outcome measures of importance to transition; and to study the effectiveness of current transition tools on improving these outcomes.

Transition from paediatric to adult care for patients with sickle cell disease.

Advances achieved over the last three decades have transformed sickle cell disease (SCD) from a fatal childhood disease to a long-term chronic condition. Consequently, patients must transition from paediatric to adult care. The transition is a high-risk period associated with increases in hospital admissions and death. The factors underlying this increased risk include not only characteristics of the disease itself, with the accumulation of disabilities and progression of organ damage, but also psychological factors and a frequent paucity of adult-care resources for SCD. Leaving the familiar paediatric team causes marked anxiety in many patients. The transition of care coincides with the many other transitions that characterize the emotional, social and academic development of adolescents. The shift from protection by parents and physicians to independent self-management may be difficult. Finally, young adults may have limited access to health insurance. In recent years, many medical groups have suggested the development of transitioning programmes combining transition schedules, printed and web-based materials, and, in some cases, transition-dedicated physicians, nurses and psychologists. Transition must begin early, involve both the paediatric and the adult team, direct appropriate attention to the parents and occur over a period of several years. Evaluations of these programmes are urgently needed.

Care of the college student.

There are approximately 20 million students in U.S. colleges and universities. Although this population is characterized as having good health, 600,000 students report some form of disability or some type of medical problem, including attention-deficit/hyperactivity disorder, learning disabilities, psychiatric disorders, and chronic illnesses, among others. Physicians can enhance youth transition to an adult model of health care; the use of self-care skills checklists is one recommended method to assist with the transition. Stimulant medications are effective for treating adults with attention-deficit/hyperactivity disorder, but physicians should use caution when prescribing stimulants to college students because of the high rates of medication diversion in this population. Depression, anxiety, posttraumatic stress disorder, sleep problems, and eating disorders are common in college students and can significantly impact performance. Emphasis on immunization of students for influenza, meningococcus, and pertussis is necessary because of the low rates of compliance. Screening and interventions for obesity, tobacco use, and substance abuse are important because of the high prevalence of these problems in college students. Screening for alcohol abuse facilitates identification of students with problem drinking behaviors. Students who are war veterans should be monitored for suicidal ideation and posttraumatic stress disorder. Lesbian, gay, bisexual, transgender, and questioning students are at risk of harassment and discrimination. Caution should be exercised when prescribing medications to college athletes to avoid violation of National Collegiate Athletic Association eligibility rules.

Youth transitioning out of foster care: an evaluation of a Supplemental Security Income policy change.

Youths with disabilities face numerous challenges when they transition to adulthood. Those who are aging out of foster care face the additional challenge of losing their foster care benefits, although some will be eligible for Supplemental Security Income (SSI) payments after foster care ceases. However, the time needed to process SSI applications exposes those youths to a potential gap in the receipt of benefits as they move between foster care and SSI. We evaluate the effects of a 2010 Social Security Administration policy change that allows such youths to apply for SSI payments 60 days earlier than the previous policy allowed. The change provides additional time for processing claims before the applicant ages out of the foster care system. We examine administrative records on SSI applications from before and after the policy change to determine if the change has decreased the gap between benefits for the target population.