Care Coordination for Children With Disabilities

Improving Care Coordination for Children With Disabilities Through an Accountable Care Organization

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.

Study Overview

• Status: Completed
• Conditions: 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 little is known 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. The investigators 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.

The investigators will use multiple methods, including focus groups, interviews, a survey, medical record data, and Medicaid 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?" The investigators 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, the investigators plan to collect data from more than 2,800 patient voices through direct study participation.

• Study Type: Observational
• Enrollment (Actual): 2188

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 3 years and older (Child, Adult, Older Adult)
• Accepts Healthy Volunteers: Yes
• Genders Eligible for Study: All

• 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.

Description

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

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Percent of Caregivers Who Reported That Their Child Has a Designated Care Coordinator	This outcome was measured using the validated tool, "Family Experiences with Coordination of Care" (FECC) survey. The FECC survey is made up of 20 separate and independent quality indicators related to care coordination for children with medical complexity. To be included in the denominator for this measure, caregivers first had to report that their child visited more than one doctor's office or used more than one kind of health care service in the 12 months prior to the survey date. To measure the percent of caregivers who reported that their child has a designated care coordinator among those in the denominator, caregivers needed to have answered yes to one of the following two questions: "Did anyone in the main provider's office help you to manage your child's care or treatment from different doctors or care providers?" or "Did anyone outside of the main provider's office help you to manage your child's care or treatment from different doctors or care providers?".	12 month lookback from time of survey

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Percent of Caregivers Who Reported That Their Care Coordinator Asked About Caregiver Concerns and Changes in the Child's Health	This outcome was measured using FECC survey. To be included in the denominator for this measure, caregivers first had to report that their child visited more than one doctor's office or used more than one kind of health care service in the 12 months prior to the survey date AND were contacted by their care coordinator in the past 3 months. Caregivers then had to respond positively to both of the following two questions: "In the last 3 months, when the person who helped you with managing your child's care contacted you, how often did he or she ask if you had any concerns about your child's health or treatment?" and "In the last 3 months, when the person who helped you with managing your child's care contacted you, how often did he or she ask if your child's health had changed in any way?".	3 month lookback from time of survey
Percent of Caregivers Who Reported Receiving a Comprehensive Written After-visit Summary in the Past 12 Months	This outcome was measured using FECC survey. To be included in the denominator for this measure, caregivers first had to report that they received a written after-visit summary from their child's main provider's office. Caregivers then had to report that the written after-visit summary contained all of the following elements: current problem list, current medication list, drug allergies, specialists involved in the child's care, planned follow-up, and what to do for problems related to the outpatient visit.	12 month lookback from time of survey
Percent of Caregivers Who Reported That Their Child's Primary Care Provider Created a Shared Care Plan for Their Child	This outcome was measured using FECC survey. Caregivers needed to have answered yes to the following question: "Has the main provider created a shared care plan for your child?".	12 month lookback from time of survey
Use of One or More Well-child Visits <=6 Years Old	Indicator of use of an age-appropriate well-child visit for children less than or equal to 6 years of age according to the Healthcare Effectiveness Data and Information Set (HEDIS) due to the Accountable Care Organization (ACO). ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of visits in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Use of One or More Well-child Visits >=12 Years Old	Use of an age-appropriate well-child visits for children greater than or equal to 12 years of age according to the Healthcare Effectiveness Data and Information Set (HEDIS) due to the ACO. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of visits in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Indicator of Use of Primary Care	An indicator of one or more outpatient visits to primary care providers (PCP). ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of visits in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Use of Outpatient Medicaid Visits to Other Behavioral Health Providers	Use of one or more outpatient visits to other mental health specialists besides psychiatrists. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of visits in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Emergency Department Use	Indicator of utilization of emergency department. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of visits in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Use of Hospitalizations	Indicator of hospitalization for patients. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of visits in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Follow-up Within 7 Days After Hospitalization	Indicator of follow-up within 7 days after hospitalization. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of visits in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 30 months post
Follow-up Within 30 Days After Hospitalization	Indicator of having follow-up within 30 days after hospitalization. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of visits in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Hospital Readmissions Within 30 Days After Discharge	Indicator of hospital readmissions within 30 days after discharge. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control group include any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of readmissions in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Hospitalization for Mental Illness	Indicator of hospitalization for mental illness for patients. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of visits in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Follow-up Within 7 Days After Hospitalization for Mental Illness	Indicator of follow-up within 7 days after hospitalization for mental illness. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of visits in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Follow-up Within 30 Days After Hospitalization for Mental Illness	Indicator of follow-up within 30 days after hospitalization for mental illness. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of visits in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Medication Use - Antidepressants	Indicator of antidepressant medication fills. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of medication fills in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Medication Use - Anticonvulsants	Indicator of use of anticonvulsant medication fills. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of medication fills in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Medication Use - Anti-anxiety Medications	Indicator of use of anti-anxiety medication. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of medication fills in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Medication Use - Anti-psychotic Medications	Indicator of use of anti-psychotic medication. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of medication fills in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Medication Use - ADHD Medications	Indicator of use of attention deficit hyperactivity disorder (ADHD) medications. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of medication fills in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Medication Use - Asthma Medications	Indicator of asthma medications fills. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of medication fills in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post
Follow-up Within 30 Days After ADHD Prescription	Indicator of one or more follow-up visits within 30 days after ADHD (attention deficit hyperactivity disorder) prescription. ACO sample includes any child who was ABD at any point during the study time period enrolled in the ACO. Control sample includes any child who was ABD and who moved from fee-for-service coverage to non-ACO managed care during the study period. Transforms a count of actual number of visits in a year to an indicator that the number was greater than zero.	23 months before policy change (2013), 36 months post

Collaborators and Investigators

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

Publications and helpful links

General Publications

• Hilligoss B, Tanenbaum SJ, Paul MH, Ferrari RM, Song PH. What makes health services usable?: Insights from a qualitative study of caregivers of children with disabilities. Health Care Manage Rev. 2021 Apr-Jun 01;46(2):111-122. doi: 10.1097/HMR.0000000000000249.
• Song PH, White BA, Chisolm DJ, Berney S, Domino ME. The effect of an accountable care organization on dental care for children with disabilities. J Public Health Dent. 2020 Sep;80(3):244-249. doi: 10.1111/jphd.12375. Epub 2020 Jun 9.
• Sheftall AH, Chisolm DJ, Alexy ER, Chavez LJ, Mangione-Smith RM, Ferrari RM, Song PH. Satisfaction With Care Coordination for Families of Children With Disabilities. J Pediatr Health Care. 2019 May-Jun;33(3):255-262. doi: 10.1016/j.pedhc.2018.08.010. Epub 2018 Nov 16.

Study record dates

Study Major Dates

• Study Start: March 1, 2015
• Primary Completion (Actual): November 30, 2017
• Study Completion (Actual): November 30, 2017

Study Registration Dates

• First Submitted: November 18, 2014
• First Submitted That Met QC Criteria: November 25, 2014
• First Posted (Estimate): December 1, 2014

Study Record Updates

• Last Update Posted (Actual): July 2, 2020
• Last Update Submitted That Met QC Criteria: June 15, 2020
• Last Verified: October 1, 2017

More Information

Terms related to this study

• Other Study ID Numbers: 14-2045

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO