Improving Health Care Transition for Youth With Special Needs

NCT ID: NCT03312621

Last Updated: 2017-10-18

Basic Information

• Recruitment Status: COMPLETED
• Clinical Phase: NA
• Total Enrollment: 209 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2012-07-12
• Study Completion Date: 2015-03-31

Brief Summary

Special opportunities exist in vulnerable populations with chronic conditions to better understand what life course factors can facilitate attainment of optimal health and development. One such opportunity arises in the life of an adolescent or young adult when they transition their care from pediatric to adult health providers and systems, referred to as "health care transition". Experts generally agree that health care transition is often unsuccessful and associated with a variety of adverse outcomes. Adverse outcomes of unsuccessful health care transition include foregone or delayed medical care and having no identified adult medical home after leaving pediatrics. This foregone and delayed care can result in potentially preventable costly utilization of hospital emergency and inpatient services. Particularly concerning is increasing evidence that for some youth, transition from pediatric to adult medical care is a high-risk period for mortality. In addition to the adverse effects on individuals, unsuccessful health care transition also likely has economic consequences, particularly given that the majority of health care spending is already allotted to individuals with chronic conditions. These problems are even greater for low income and minority youth, with the District of Columbia having the highest level of unmet transition needs in the U.S.

Detailed Description

Special opportunities exist in vulnerable populations with chronic conditions to better understand what life course factors can facilitate attainment of optimal health and development. One such opportunity arises in the life of an adolescent or young adult when they transition their care from pediatric to adult health providers and systems, referred to as "health care transition". Experts generally agree that health care transition is often unsuccessful and associated with a variety of adverse outcomes. Adverse outcomes of unsuccessful health care transition include foregone or delayed medical care and having no identified adult medical home after leaving pediatrics. This foregone and delayed care can result in potentially preventable costly utilization of hospital emergency and inpatient services. Particularly concerning is increasing evidence that for some youth, transition from pediatric to adult medical care is a high-risk period for mortality. In addition to the adverse effects on individuals, unsuccessful health care transition also likely has economic consequences, particularly given that the majority of health care spending is already allotted to individuals with chronic conditions. These problems are even greater for low income and minority youth, with the District of Columbia having the highest level of unmet transition needs in the U.S.

In light of these facts, it becomes urgent to implement recommended standards for health care transition and evaluate their impact on transition outcomes. This research quantifies the impact of recommended health care transition practices using a randomized trial design and analysis following the intention-to-treat paradigm. The investigators do so by comparing aspects of 1) health care transition effectiveness (i.e., care coordination, timing, and services received); 2) experience of care (i.e., satisfaction and quality of chronic illness care); and 3) health care utilization in a population of 18-22 year-old African-American adolescents with special health care needs, receiving primary care in an urban academic adolescent medicine practice, using standardized outcome measures. Half of participants received usual care enhanced by written transition information, and half received a health care transition intervention modeled on the joint American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians best practices report, released July 2011 that identified six recommended core components for transition programs. These include both practice based components (i.e. written transition policy, transitioning youth registry, and transfer of care) and patient level components (i.e. transition planning and completion). This report makes available an important standard for establishing transition practices but also demands careful evaluation.

Conditions

Health Care Transition; Care Coordination

Keywords

Adolescent Health

Study Design

• Allocation Method: RANDOMIZED
• Intervention Model: PARALLEL
• Primary Study Purpose: HEALTH_SERVICES_RESEARCH
• Blinding Strategy: SINGLE

Study Groups

Intervention

The intervention group received all aspects of enhanced usual care but was also assigned a healthcare transition nurse who coordinated the delivery of specific intervention services. These services included 1) a face-to-face systematic review of the readiness assessment with the participant/caregiver 2) a status assessment of ongoing healthcare transition planning and preparation; 3) monthly phone calls with the participant/caregiver to update and fill gaps in the healthcare transition action plan.

Group Type: EXPERIMENTAL

Health Care Transition Care Coordination

Intervention Type: BEHAVIORAL

These services included 1) a face-to-face systematic review of the readiness assessment with the participant/caregiver 2) a status assessment of ongoing healthcare transition planning and preparation; 3) monthly phone calls with the participant/caregiver to update and fill gaps in the healthcare transition action plan.

Control

The control group received enhanced usual care which provides standardized healthcare transition-specific written information including a written transition policy, as well as insurance and guardianship information. Participants were also provided with a transition readiness assessment and entered into a healthcare transition registry to facilitate tracking and communication.

Group Type: NO_INTERVENTION

No interventions assigned to this group

Interventions

Health Care Transition Care Coordination

These services included 1) a face-to-face systematic review of the readiness assessment with the participant/caregiver 2) a status assessment of ongoing healthcare transition planning and preparation; 3) monthly phone calls with the participant/caregiver to update and fill gaps in the healthcare transition action plan.

Intervention Type: BEHAVIORAL

Eligibility Criteria

Inclusion Criteria

• African-American, 16-22 years old at enrollment, receiving primary care at Adolescent Health Center, Recipient of Health Services for Children with Special Needs, Inc. insurance.

• Minimum Eligible Age: 16 Years
• Maximum Eligible Age: 22 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Health Resources and Services Administration (HRSA)

FED

Sponsor Role: collaborator

Lisa Tuchman

OTHER

Sponsor Role: lead

Responsible Party

Lisa Tuchman

Principal Investigator

Responsibility Role: SPONSOR_INVESTIGATOR

Principal Investigators

Lisa K Tuchman, MD, MPH

Role: PRINCIPAL_INVESTIGATOR

Children's National Research Institute

References

Lemke M, Kappel R, McCarter R, D'Angelo L, Tuchman LK. Perceptions of Health Care Transition Care Coordination in Patients With Chronic Illness. Pediatrics. 2018 May;141(5):e20173168. doi: 10.1542/peds.2017-3168. Epub 2018 Apr 12.

Reference Type: DERIVED

PMID: 29650807 (View on PubMed)

Other Identifiers

R40MC23627

Identifier Type: OTHER_GRANT

Identifier Source: secondary_id

Pro2500

Identifier Type: -

Identifier Source: org_study_id