Improving Health Care Transition for Youth With Special Needs

NCT03312621 | Completed

• 2 other identifiers: Pro2500R40MC23627
• Study Type: interventional
• Target: 209
• Locations: 0 countries
• Sites: N/A

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.

Conditions

Health Care Transition; Care Coordination

Keywords

Adolescent Health

Outcome Measures

Primary Outcomes (1)

• Care Coordination

  Mean score of Client Perceptions of Coordination Questionnaire (CPCQ)

  2 years

Secondary Outcomes (3)

• Patient-level experiences of care

  2 years

• Healthcare utilization

  2 years

• Healthcare cost

  2 years

Study Arms (2)

Intervention

EXPERIMENTAL

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.

Behavioral: Health Care Transition Care Coordination

Control

NO INTERVENTION

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.

Interventions

Health Care Transition Care Coordination 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.

Intervention

Eligibility Criteria

• Age: 16 Years - 22 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64)

You may qualify if:

• 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.

Sponsors & Collaborators

• Lisa Tuchman: lead
• Health Resources and Services Administration (HRSA): collaborator

Related Publications (1)

• 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.

  PMID: 29650807 DERIVED

Study Officials

• Lisa K Tuchman, MD, MPH

  Children's National Research Institute

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: SINGLE
• Who Masked: PARTICIPANT
• Purpose: HEALTH SERVICES RESEARCH
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR INVESTIGATOR
• PI Title: Principal Investigator

Study Record Dates

• First Submitted: October 3, 2017
• First Posted: October 18, 2017
• Study Start: July 12, 2012
• Primary Completion: March 31, 2015
• Study Completion: March 31, 2015
• Last Updated: October 18, 2017

Record last verified: 2017-10

Data Sharing

• IPD Sharing: Will not share