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Improving Health Care Transition for Youth With Special Needs

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ClinicalTrials.gov Identifier: NCT03312621
Recruitment Status : Completed
First Posted : October 18, 2017
Last Update Posted : October 18, 2017
Sponsor:
Collaborator:
Health Resources and Services Administration (HRSA)
Information provided by (Responsible Party):
Lisa Tuchman, Children's National Research Institute

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.

Condition or disease Intervention/treatment Phase
Health Care Transition Care Coordination Behavioral: Health Care Transition Care Coordination Not Applicable

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.

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Study Type : Interventional  (Clinical Trial)
Actual Enrollment : 209 participants
Allocation: Randomized
Intervention Model: Parallel Assignment
Masking: Single (Participant)
Primary Purpose: Health Services Research
Official Title: Implementing a Randomized Care Coordination Intervention for Minority Youth With Special Health Care Needs During Health Care Transition From Pediatric to Adult Health Care.
Actual Study Start Date : July 12, 2012
Actual Primary Completion Date : March 31, 2015
Actual Study Completion Date : March 31, 2015

Resource links provided by the National Library of Medicine


Arm Intervention/treatment
Experimental: 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.
Behavioral: 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.

No Intervention: 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.



Primary Outcome Measures :
  1. Care Coordination [ Time Frame: 2 years ]
    Mean score of Client Perceptions of Coordination Questionnaire (CPCQ)


Secondary Outcome Measures :
  1. Patient-level experiences of care [ Time Frame: 2 years ]
    Mean score of Patient Assessment of Chronic Illness Care Questionnaire (PACIC)

  2. Healthcare utilization [ Time Frame: 2 years ]
    Summary statistics of healthcare utilization

  3. Healthcare cost [ Time Frame: 2 years ]
    Summary statistics of healthcare cost



Information from the National Library of Medicine

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Ages Eligible for Study:   16 Years to 22 Years   (Child, Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
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.

Exclusion Criteria:

  • Exclusion criteria include individuals who have already been transferred from the adolescent health center to another practice and those with insufficient knowledge of English to participate in the telephone interviews.

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03312621


Sponsors and Collaborators
Lisa Tuchman
Health Resources and Services Administration (HRSA)
Investigators
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Principal Investigator: Lisa K Tuchman, MD, MPH Children's National Research Institute
Publications automatically indexed to this study by ClinicalTrials.gov Identifier (NCT Number):
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Responsible Party: Lisa Tuchman, Principal Investigator, Children's National Research Institute
ClinicalTrials.gov Identifier: NCT03312621    
Other Study ID Numbers: Pro2500
R40MC23627 ( Other Grant/Funding Number: HRSA MCHB )
First Posted: October 18, 2017    Key Record Dates
Last Update Posted: October 18, 2017
Last Verified: October 2017
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No

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Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No
Keywords provided by Lisa Tuchman, Children's National Research Institute:
Adolescent Health