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Care Coordination for Children With Disabilities

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ClinicalTrials.gov Identifier: NCT02304380
Recruitment Status : Unknown
Verified November 2016 by University of North Carolina, Chapel Hill.
Recruitment status was:  Active, not recruiting
First Posted : December 1, 2014
Last Update Posted : November 10, 2016
Sponsor:
Collaborator:
Patient-Centered Outcomes Research Institute
Information provided by (Responsible Party):
University of North Carolina, Chapel Hill

Brief Summary:
The proposed study uses a recent policy change in Ohio as a natural experiment to assess outcomes and experiences of children who qualify for Medicaid under the Aged, Blind, Disabled category and their caregivers in an ACO model of care compared to their previous outcomes and experiences in a traditional fee-for-service model.

Condition or disease
Experiences With Health Care Coordination

Detailed Description:

Children with disabilities have complex healthcare needs requiring multiple providers in multiple locations. The lack of coordinated care for this vulnerable population leads to poorer outcomes, higher costs, and increased stress and time demands for patients and their caregivers. Traditionally, under arrangements known as fee-for-service, there have been no financial incentives for providers to coordinate care; however, the Affordable Care Act is changing that. Accountable care organizations (ACOs) are groups of healthcare providers that organize in new ways to take responsibility for the care of a defined population. ACOs share in any savings associated with improved quality and efficiency of the care they provide. Although most ACOs currently do not cover children with disabilities, many are considering adding these to the populations they serve. Yet we know little about effectiveness of the care coordination strategies they employ on children with disabilities.

The goal of this research is to assess care coordination for and patient-centered outcomes of children with disabilities (who qualify for Medicaid under the Aged, Blind, Disabled category (ABD) under an ACO as compared with traditional fee-for-service plans. We will use a recent policy change in Ohio that mandates children with disabilities move from traditional fee-for-service Medicaid plans into managed care arrangements such as ACOs. This mandate resulted in 8,000 disabled children automatically becoming part of the nation's largest pediatric ACO.

We will use multiple methods, including focus groups, interviews, a survey, medical record data, and Medicare claims, to compare patient experiences and care under the ACO with experiences and care under the previous fee-for-service model. What impact will this research have? Our research will inform ACOs about the relative benefits and challenges of coordinating care and improving the health outcomes of children with disabilities and will help those organizations determine whether or not they can adequately serve the needs of this population. In addition, the findings will provide patients and caregivers with valuable information that can help them make decisions when faced with an increasingly common scenario, for example: "The parents of a child with cerebral palsy receive a letter from their state Medicaid program that children are being enrolled in an 'accountable care organization.' How certain can they be that their child's care will be improved? What are the problems that might occur?" We will engage patients, their caregivers, and health system stakeholders throughout the research process. Patient advocates have been involved in the design of our study. A patient advisory panel comprised of caregivers and advocates of disabled children will guide our project by providing advice at quarterly meetings. In addition, we will collect data from more than 2,800 patient voices through direct study participation.

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Study Type : Observational
Actual Enrollment : 2118 participants
Observational Model: Other
Time Perspective: Other
Official Title: Improving Care Coordination for Children With Disabilities Through an Accountable Care Organization
Study Start Date : March 2015
Estimated Primary Completion Date : June 2017
Estimated Study Completion Date : June 2017



Primary Outcome Measures :
  1. Care coordination [ Time Frame: 2 years ]
    Care coordination defined as: "Caregivers of children with complex needs should report that their child has a designated care coordinator."


Secondary Outcome Measures :
  1. Care communication [ Time Frame: 2 years ]
    Care coordination communication defined as: "Caregivers of children with complex needs who report having a care coordinator and who report that their care coordinator has contacted them in the last 3 months should also report that their care coordinator asked them about the following: Caregiver concerns, Health changes of the child."; and "Caregivers/patients who reported ever receiving a visit summary in the last 12 months from their child's MP's office (as identified in IE2) should report that the summary: Was easy to understand, Was useful"

  2. Care planning [ Time Frame: 2 years ]
    Care planning defined as: "Their child's primary care provider created a shared care plan for their child."

  3. age-appropriate well child visits [ Time Frame: 2 years ]
    Per medical records, on time with recommended well-child visits

  4. childhood immunization status [ Time Frame: 2 years ]
    Per medical records, up to date on immunizations

  5. follow-up after hospitalization for mental illness [ Time Frame: 2 years ]
    Per medical records, follow-up from care coordinator after hospitalization

  6. emergency department use, admissions, and re-admissions [ Time Frame: 2 years ]
    Per medical records, emergency department visits

  7. access to primary and specialty care [ Time Frame: 2 years ]
    Per medical records

  8. timely follow-up after Initial prescriptions of Attention Deficit Hyperactivity Disorder medications or after psychiatric hospitalization [ Time Frame: 2 years ]
    Per medical records, follow up from care coordinator



Information from the National Library of Medicine

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Ages Eligible for Study:   3 Years and older   (Child, Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population
Children who qualify for Medicaid under the Aged, Blind, and Disabled category, and their caregivers, who are part of the Nationwide Children's Hospital Partners for Kids Accountable Care Organization (ACO) in Columbus, Ohio.
Criteria

Inclusion Criteria:

Stakeholder Interviews

- Be associated with the ACO as ACO leadership, a care coordinator, a payor or policy-maker.

Caregiver Interviews

  • Currently live in south-central Ohio
  • Have lived in south-central Ohio since July 2012
  • Be a caregiver of a child ages 3-18 who qualifies for Medicaid under the Aged, Blind, and Disabled category

Focus Groups, Caregivers and Youth

  • Currently live in south-central Ohio
  • Have lived in south-central Ohio since July 2012
  • Be a caregiver of a child ages 3-18 who qualifies for Medicaid under the Aged, Blind, and Disabled (ABD) category, who receives care at Nationwide Children's Hospital, Partners for Kids
  • For youth focus groups, be a child ages 14-18 who qualifies for Medicaid under the Aged, Blind, and Disabled category, who is intellectually capable of participating in focus groups, and who receives care at Nationwide Children's Hospital, Partners for Kids

Exclusion Criteria:

  • Non-English-speaking
  • For youth focus groups, intellectual disabilities that preclude being able to participate in a focus group

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): NCT02304380


Sponsors and Collaborators
University of North Carolina, Chapel Hill
Patient-Centered Outcomes Research Institute
Investigators
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Principal Investigator: Paula Song, PhD UNC Chapel Hill

Publications automatically indexed to this study by ClinicalTrials.gov Identifier (NCT Number):
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Responsible Party: University of North Carolina, Chapel Hill
ClinicalTrials.gov Identifier: NCT02304380    
Other Study ID Numbers: 14-2045
First Posted: December 1, 2014    Key Record Dates
Last Update Posted: November 10, 2016
Last Verified: November 2016
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No