January 2004

Grant Results

SUMMARY

From 2001 to 2002, staff from the National Initiative for Children's Healthcare Quality developed a learning collaborative designed to improve care for children with Attention Deficit Hyperactivity Disorder (ADHD) and held an international summit on the subject to disseminate the results further.

Key Results
As reported by the project director to the Robert Wood Johnson Foundation (RWJF), project staff:

  • Established a learning collaborative involving 26 sites, ranging from small, private medical practices to community health centers and to academic medical centers in diverse communities.
  • Organized a conference — held November 9–10, 2002, in Orlando, Fla. — that showcased the work of the collaborative sites and brought together 89 clinicians, educators and health care leaders.

Key Findings
Based on data collected at each site, the project director identified the following improvements as most significant:

  • An increase from 38 to 82 percent of patients who had the benefits and risks of their treatment options explained.
  • An increase from 40 to 82 percent of patients with written care plans in their charts.
  • An increase from 20 to about 65 percent of patients with identified goals documented on their care plans.
  • An increase from 15 to 53 percent of patients who maintained an acceptable level of functioning or improved their functioning by 25 percent.

Funding
RWJF supported this project through a grant of $367,890.

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THE PROBLEM

People with ADHD have difficulty concentrating and, in some cases, sitting still and controlling impulsive behavior; these symptoms are also associated with impaired function. The most common behavioral health condition in children, ADHD can result in low self-esteem, social isolation and poor performance at school. Despite strong evidence about the elements of care that are effective in improving outcomes for children with ADHD, there are huge gaps between best practices and usual practices.

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THE PROJECT

Building the Collaborative

The purpose of this project at the National Initiative for Children's Healthcare Quality was to change the systems of care and outcomes for children with ADHD by working with clinicians, their office staffs, parents and their community school and mental health partners.

Project staff developed an ADHD learning collaborative involving 26 sites, ranging from small, private medical practices to community health centers and to academic medical centers in diverse communities.

Each site was expected to involve a multidisciplinary team comprised of some combination of physicians, nurses and support staff, including administrative, front-desk, medical records and information system personnel, as well as parents, teachers and mental health providers.

Because the agency had previously formed a partnership with the North Carolina Department of Medical Assistance, 13 of the teams were in North Carolina and represented practices with a large proportion of Medicaid patients. Scattered across the United States, the remaining teams represented both small towns and large cities.

The Care Model

The ADHD learning collaborative applied the chronic care model developed under the RWJF National Program Improving Chronic Illness Care to address major gaps between best and usual practices for people with chronic conditions.

This model identifies the essential health care elements that encourage high-quality chronic disease management and promote effective interactions between patients and provider teams.

These elements include community resources and health care organization policies and procedures as well as delivery system design, decision support and clinical information systems in the service of promoting effective self-management support.

Modifications to the care model made by the initiative for work with children include placing greater emphasis on community resources (such as schools) and paying separate attention to family-management as well as child self-management support.

Administration of the Project

The National Initiative for Children's Healthcare Quality began as a program of the nonprofit Institute for Healthcare Improvement. Although now independent, the initiative and the institute maintain a close working relationship.

The faculty, composed of national leaders in child development and psychiatry, educators and parents of children with ADHD, guided the project (see the Appendix).

Other Funding

The U.S. Agency for Healthcare Research and Quality, the David and Lucile Packard Foundation, the Alza Corporation and the North Carolina Department of Medical Assistance provided additional support.

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RESULTS

As reported by the project director to RWJF, the initiative:

  • Established a learning collaborative that included three learning sessions, a listserv, monthly conference calls and a Web-based extranet that allowed sharing of data, results, tools and documents. The learning sessions provided interactive, problem-solving training about ADHD and chronic care and strategies to enable staff at each site to implement changes. Using coaching telephone calls and e-mail discussion groups, faculty assisted participants between learning sessions. Five teams pilot-tested an ADHD resource toolkit for clinicians, which was developed in collaboration with the American Academy of Pediatrics and is now available without charge on the Web.
  • Sponsored "Improving Care for Children with ADHD: First International Summit," which showcased the work of the ADHD collaborative sites and brought together clinicians, educators and health care leaders. Eighty-nine people attended the summit, held November 9–10, 2002, in Orlando, Fla. The summit featured four plenary presentations, one plenary panel, 10 mini-plenary sessions and 10 workshops.

Findings

Based on data collected at each site, the project director identified the following improvements as most significant:

  • An increase from 38 to 82 percent of patients who had the benefits and risks of their treatment options explained.
  • An increase from 40 to 82 percent of patients with written care plans in their charts.
  • An increase from 20 to about 65 percent of patients with identified goals documented on their care plans.
  • An increase from 15 to 53 percent of patients who maintained an acceptable level of functioning or improved their functioning by 25 percent.

Communications

The initiative disseminated project results through the summit and several journal articles, and posted the toolkit on its Web site.

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LESSONS LEARNED

  1. Primary care physicians can improve outcomes by implementing a comprehensive and organized approach to the care of children with ADHD that combines evidence-based guidelines with the care model for children's health (the modified chronic care model) and emphasizes working with community-based schools, mental health providers and parents. Family members and providers both reported increased satisfaction. (Project Director)

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AFTER THE GRANT

With support from RWJF, the initiative created and is disseminating a pamphlet describing the learning collaborative, as well as audiotapes and videotapes of the summit. This project also led to a grant from the Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services, for the initiative to work with the American Academy of Pediatrics and Children and Adults with Attention-Deficit/Hyperactivity Disorder to further implement this improved approach to care on a local basis.

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GRANT DETAILS & CONTACT INFORMATION

Project

Building a Collaborative to Improve Care for Children with Attention Deficit Hyperactivity Disorder

Grantee

Institute for Healthcare Improvement (Boston,  MA)

  • Amount: $ 367,890
    Dates: September 2001 to December 2002
    ID#:  043155

Contact

Shawn Hatcher
(617) 754-4809
SHatcher@nichq.org

Web Site

http://www.nichq.org

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APPENDICES


Appendix 1

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

Collaborative Faculty

(All of the individuals listed below are members of the expert panel; faculty members are designated.)

Mark Wolraich, M.D. (Collaborative Chair)
Director
Child Study Center, Oklahoma University Health Sciences Center
Oklahoma City, Okla.

Charles Homer, M.D., M.P.H. (Collaborative Co-Chair)
Chief Executive Officer
National Initiative for Children's Healthcare Quality
Boston, Mass.

Harlan Gephart, M.D.
Medical Director, Group Health
Center for Attention Deficit Disorders
Seattle, Wash.

Maureen Gill, M.S.W. (Faculty)
Pediatric Social Worker
CHADD (Children and Adults with Attention-Deficit/Hyperactivity Disorder) Representative
Chantilly, Va.

Jane N. Hannah, Ed.D. (Faculty)
Educator
Nashville, Tenn.

Daniel Hyman, M.D.
Chief Medical Officer, Ambulatory Care Network
New York Presbyterian Hospital
New York, N.Y.

Peter Jensen, M.D. (Faculty)
Director, Center for the Advancement of Children's Mental Health
Columbia University School of Medicine
New York, N.Y.

Beth Kaplanek, R.N.
Past President
CHADD — Children and Adults with Attention-Deficit/Hyperactivity Disorder
New York, N.Y.

Carole Lannon, M.D., M.P.H. (Faculty)
Executive Vice President and American Academy of Pediatrics Liaison
National Initiative for Children's Healthcare Quality
Chapel Hill, N.C.

Laurel Leslie, M.D. (Faculty)
Research Scientist
Child & Adolescent Services Research Center
Children's Hospital of San Diego
San Diego, Calif.

William Pelham, Jr., Ph.D. (Faculty)
Professor
State University of New York, Buffalo
Buffalo, N.Y.

James Perrin, M.D. (Faculty)
Associate Professor, Division of Pediatrics
Massachusetts General Hospital
Boston, Mass.

Karen Pierce, M.D. (Faculty)
Medical Director, Partial Hospitalization Program
Department of Child and Adolescent Psychiatry
Children's Memorial Hospital
Chicago, Ill.

Lloyd Provost (Faculty)
Consultant
Associates in Process Improvement
Austin, Texas

Sandra Reif, M.A. (Faculty)
Educator and Author
San Diego, Calif.

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Book Chapters

Homer C. "Groundbreaking Advances in the Collaborative Care of Children with ADHD." In The ADHD Book of Lists, S Rief (ed.). San Francisco: Jossey-Bass, 2003

Articles

Gephart H. "Self-Management Concepts Applied to ADHD in Children." Family and Child Health Bulletin, 16(2): 9–10, 2002.

Heinrich P. "Promising Practices," Attention Magazine, 9(2): 10–11, 2002.

Homer C. Editorial: "Quality of Care for Children and the Role of Patient and Family Self-Management." Family and Child Health Bulletin, 16(2): 3–4, 2002.

Hyman D and Homer C. "FOCUS: Improving Care for Children with ADHD National Initiative for Children's Healthcare Quality." Developmental and Behavioral News, 11(2): 9–10, 2002.

Reports

Homer C and Heinrich P. Building and Strengthening Capacity to Promote and Maintain High Quality Care for Medicaid Beneficiaries Breakthrough Series Collaborative on Improving Care for Children with Attention Deficit Hyperactivity Disorder. Boston: National Initiative for Children's Healthcare Quality, 2002.

Survey Instruments

"National Initiative for Children's Healthcare Quality, Assessment of Chronic Illness Care for ADHD." National Initiative for Children's Healthcare Quality, fielded January–June 2002.

Sponsored Conferences

"Learning Session One, National Initiative for Children's Healthcare Quality," September 12–13, 2001, Durham, N.C. Attended by 87 participants in the learning collaborative on improving care for children with ADHD representing 58 organizations. Examples of organizations represented included Intermountain Health Care, Okalahoma University Pediatrics, Sandhills Pediatrics, Panorama Pediatric Group, East Carolina University Pediatric Outpatient Center, Orlando Regional Healthcare Pediatric Outpatient Department. Ten presentations, one question-and-answer session, 12 breakout sessions and three workshops.

"Learning Session Two, National Initiative for Children's Healthcare Quality," January 10–11, 2002, Durham, N.C. Attended by 96 participants in the learning collaborative on improving care for children with ADHD representing 61 organizations. For examples of organizations represented, see above. Note the participants at each learning session were the same. Four presentations, one question-and-answer session, one plenary panel session, 17 breakout sessions and four workshops.

"Learning Session Three, National Initiative for Children's Healthcare Quality," June 9–11, 2002, Durham, N.C. Attended by 100 participants in the learning collaborative on improving care for children with ADHD representing 66 organizations. For examples of organizations represented, see above. Six presentations, one question-and-answer session, 16 breakout sessions and one workshop.

"Improving Care for Children with ADHD: First International Summit," November 9–10, 2002, Orlando, Fla. Attended by 139 people representing 97 organizations. Examples of organizations represented include the American Academy of Pediatrics, Manatee Country Rural Health Services, Bronson Medical Group and Carillon Elementary School. Four plenary presentations, one plenary panel, 10 mini-plenary sessions and 10 workshops.

World Wide Web Sites

www.nichq.org provides an overview of the National Initiative for Children's Healthcare Quality, including a page on Attention Deficit/Hyperactivity Disorder, with links to public resources such as the National Initiative for Children's Healthcare Quality/American Academy of Pediatrics ADHD Toolkit. Boston: National Initiative for Children's Healthcare Quality. National Initiative for Children's Healthcare Quality was incorporated as an independent not-for-profit on July 1, 2002.

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Report prepared by: Lori De Milto
Reviewed by: Karyn Feiden
Reviewed by: Marian Bass
Program Officer: C. Tracy Orleans