An Editorial Webinar Presented by ADVANCE for Respiratory Care & Sleep Medicine and the Merck Childhood Asthma Network, Inc.

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1 An Editorial Webinar Presented by ADVANCE for Respiratory Care & Sleep Medicine and the Merck Childhood Asthma Network, Inc. April 13, 2011

2 Today s Agenda and Speakers The Challenges of Childhood Asthma Dr. Floyd Malveaux, Merck Childhood Asthma Network, Inc. Early Insights from the HEAL Phase II Project Dr. Leonard Jack, Xavier University Lessons Learned from the Community Asthma Prevention Program Dr. Tyra Bryant-Stephens, Children s Hospital of Philadelphia Managing Childhood Asthma in the School System Yolanda Cuevas, Los Angeles Unified School District Q&A

3 The Challenges of Childhood Asthma Floyd J. Malveaux, M.D., Ph.D. Executive Director Merck Childhood Asthma Network, Inc. (202)

4 The Merck Childhood Asthma Network, Inc. (MCAN) is a nonprofit organization [501(c)(3)] founded in 2005 and funded by The Merck Company Foundation Mission: To enhance the quality of life for children with asthma and their families, and to reduce the burden of the disease on them and society

5 MCAN Aims to Make a Difference in the Lives of Millions of Children with Asthma Improve access to and quality of healthcare for children, especially the vulnerable and medically underserved Advocate for policies that expedite dissemination, implementation and sustainability of science-based asthma care Increase awareness and knowledge of asthma and quality asthma care

6 Childhood Asthma is Challenging on Many Levels Widespread and Serious 1 in 7 ever diagnosed 9% currently have it 60% have had at least one attack in the past year Costly $8-10 billion in medical expenditures ( 10) Additional $10 billion in indirect costs 40% higher emergency department costs Preventable and Avoidable

7 Overcoming Asthma Requires More Than Just the Right Medical Care We know enough about asthma to do better in controlling its symptoms: assure better access to quality, affordable care, and implement/sustain efficacious science-based programs Bring together the right people, programs and policies in ways that remove barriers and promote enhancers for better asthma management and care Document and share the results of implementation research and the approaches that are most effective, and then work to sustain the changes

8 Current Research Definitions Central to Systemic Change, Quality Care Implementation Research is the study of how a specific set of activities and designed strategies effect the integration of evidence-based information and interventions into health care and community health practices Vol. 6, No. 6, November/December 2008

9 Translational Research Continuum from Bench to Practice Cells Diseases People Practices Will it work? Is it worth it? Can it work? What s possible? Re-engineering Facilitation Training Implementation Dissemination Best Practices Cost-effectiveness Phase IV Trials Meta-analysis Guidelines Phase III Trials Phase II Trials Phase I Trials Exp. Animals Cells/Tissues Biochemistry Practice T T T=QI Practice- Based Research Human Research Basic Research Not ready for practice Not ready for patients Not ready for humans

10 Implementation Research: Important Asthma Outcomes Translation/Implementation of results from randomized clinical trials (RCT) into routine clinical practice and public-health decision making helps: Ensure access to high quality health care Implement evidence-based guidelines and interventions Coordinate systems of care (clinical, social, school, etc.) Improve communication - providers, patients, families Address environmental issues that impact health Encourage healthy behavior to reduce risk/enhance QOL

11 Implementation Research Has Taught Us Important Lessons Interventions Often Multi-Level Evidence-based interventions (EBI) deemed efficacious within clinical or community-based trials are often multi-level interventions and are not easily translated into routine practice Variety and Adaptation Important Context is important and EBI are rarely transferable without adaptations to specific settings; partnerships and varied approaches are essential Should Address Real World Implementation research should address the level to which health interventions can be integrated into realworld public health and clinical service delivery systems

12 Early Insights from the Head-Off Environmental Asthma in Louisiana (HEAL) Phase II Project Leonard Jack, Jr., Ph.D., MSc. Lead Investigator, HEAL Phase II Program Director, Center for Minority Health & Health Disparities Research and Education Xavier University (504)

13 HEAL Phase II Hopes to Improve Health Outcomes by Expanding on Phase I Lessons HEAL I included multifaceted approach: Asthma counselor intervention (National Cooperative Inner City Asthma Study) Environmental intervention (Inner City Asthma Study) HEAL II will: Extend and build upon the lessons learned from HEAL Phase I Improve pediatric asthma management in Greater New Orleans area Examine those aspects of the HEAL II intervention that have the greatest impact on outcomes

14 Collaboration Key to HEAL II Success Xavier University College of Pharmacy Center for Minority Health and Health Disparities Research and Education Daughters of Charity New Orleans (DCSNO) Merck Childhood Asthma Network (MCAN)

15 HEAL to Integrate Best Practices into Existing Structure at Daughters of Charity New Orleans PATIENT CENTRIC SERVICES Continuous Quality Improvement Patient s Desires & Needs Open Access Patient Panels Team Based Care MD Nurse CM CMA Pt Care Coord Project Collaboratives Outcome and Results Measures Population Registries Immediate Behavioral Health Consultant Continuous Quality Improvement PROACTIVE TREATMENT

16 Engaging Stakeholders Early in the Process is Key to Informing Program, Improving Outcomes

17 Building Trust, Tapping into Existing Resources Present Opportunities, Challenges Intervention fidelity Evaluation: What is Success? Building upon mutual interests and strengths New partnerships require time to establish and maintain trust

18 Outcomes, Evaluation Protocol Should be Key Factors in Each Stage of Program Data Collection and Evaluation Evaluate change in health status/health outcomes Program Evaluation Outcomes: What are the right data? Program Outcomes to Evaluate Health Systems Patient Quality of Life Asthma Self-Efficacy Patient Satisfaction Symptom Monitoring Providers Implementation of NAEPP-EPR3 Training Satisfaction

19 Programs Should be Sustainable and Best Practices Easy to Institutionalize Electronic Medical Records Decision Support Tool Utilize Electronic Asthma Action Plan Clinical Outcomes Peak Flow Lung Function Program Sustainability Participation Rates Attrition Rates Capacity to Deliver Intervention

20 Lessons Learned from the Community Asthma Prevention Program (CAPP) Tyra Bryant-Stephens, M.D. Director and Founder, Community Asthma Prevention Program The Children s Hospital of Philadelphia Clinical Associate Professor of Pediatrics, The University of Pennsylvania School of Medicine (215) stephenst@ .chop.edu

21 CAPP Has a Long History of Helping Philadelphia Children with Asthma Founded in 1997 Premise: Despite medical advancements, children in West Philadelphia urban primary care practice continued to go to the ED and hospital for asthma exacerbations Clearly a gap existed between medical management and self-management behavior

22 CAPP is founded by Dr. T. Bryant- Stephens in response to high prevalence of asthma ED visits. Home Visits added. Classes and and Train-the-Trainer are implemented Community Advisory Board established CAPP receives NIEHS EJ award for West Philadelphia Controlling Asthma in American Cities project implemented over five years Merck Childhood Asthma Network Funds school, home and community interventions Door-to-door and school screenings strategies include community education,, and training community leaders CAPP expands Home Visits program in West. South, & Southwest Philadelphia (EPA). CAPP Collaborative is formed. The four-prong approach includes: Home Visits, Community Classes, PCP Training, and School Interventions. Smoking Cessaition Counseling added to CAPP. MCAN funds Asthma Health Navigator Program

23 Making Community Connections is Key to Program Success Identified stakeholders through colleagues, community agency lists, residents and word-of-mouth PI and Study Coordinator met individually with stakeholders Started at ground zero Do you think asthma is a problem in your community? How much of a problem? Are there resources already present? What else would you like to see? Worked through our community relations department to identify other organizations Started making cold calls to community-based orgs (CBOs), faith-based orgs (FBOs) and other stakeholders

24 Multiple Benefits of Getting the Community Involved in Solving the Asthma Problem Involve community agencies who are already working at a grassroots level in the planning Be flexible in meeting times for meeting with people who live in the community Go to the leaders of the CBOs, admit your ignorance Ask what? How? Where? Answer for the CBOs why?

25 Reaching the Community Where they Live, Work and Play is an Important First Step Used local papers Distributed flyers to all community sites Offered an asthma education class to the staff of different community sites in exchange for hosting a class Removed barriers such as transportation, childcare, classes held at evening hours

26 CAPP Ensures Longevity by Equipping the Community with Asthma Educators Train parents who are highly motivated and attend your classes to teach the classes Hire lay educators from the community Believe in word of mouth Respect targeted population s cultural beliefs and practices. Incorporate into your curriculum.

27 Healthcare Providers Can be Important Partners in Community Programs Ask for permission to share families participation with your program Send letters to PCPs Offer to come (bring lunch) and talk about your program Allow PCPs to refer through website/fax Leave information flyers in their offices

28 Establishing a Trusting Relationship is Key Allowed the community to be the experts Admit our ignorance about the pressures they have which exist outside our area of research (e.g., undocumentation, cultural differences) Ongoing conversations and clarification of what everyone needed Were honest about what each stakeholder needed from the partnership asked the hard questions at the beginning created MOUs Flexibility - Protocol amendments made as needed

29 Keeping Partners Engaged is an Important Element of a Successful Program Leadership meetings on a monthly basis Monthly team implementation meetings where all stakeholders involved attended Collaborative, CAB, or project meetings on a quarterly basis For subcontractors in the beginning checked in via phone or on a weekly basis

30 Determine Protocol for Working with Partners to Ensure Adequate Research Methods Establish parameters for technical assistance from the research team Had comprehensive training and orientation process; Central supervision of research methodology and data collection Daily calls to supervisor with schedules Monthly meetings with all field workers; reviewing data forms each month Data QA meetings quarterly Expect and Inspect

31 Programs that Keep the Community Involved Long-Term Are Most Successful Let the community have final approval of project Insist upon a true partnership Create opportunities for ownership of the project (e.g., C.A.B., steering committee) Have interactive meetings Give opportunities for anonymous feedback about the project Stamp out fires quickly and directly

32 CAPP s Success is Based on Implementing a 360 Approach to Community Programs Highly effective partnerships Collaborative model: Two-way partnership Utilization of community residents as experts in design of research and frontline implementers Rigorous training of community health workers Commitment to leave the community better equipped to manage asthma

33 Managing Childhood Asthma in the School System Los Angeles Unified School District Nursing Services Asthma Program The Mission of the LAUSD Nursing Services Asthma Program is to improve the health and academic achievement of students with asthma by reducing asthma exacerbations through the education of students, parents and staff on the prevention and management of asthma. Yolanda Cuevas, RN, BSN, MAed, PHN, RCP Program Manager and Credentialed School Nurse Los Angeles Unified School District s Nursing Services Asthma Program (213) Yolanda.cuevas@lausd.net

34 Implementing an Asthma Program in LAUSD Challenging but Necessary 2 nd largest school district in the nation A diverse, urban student population 74% Hispanic; 11% African American ~80% eligible for school meal program An estimated 77,000 students with asthma

35 LAUSD Nursing Services Program Targets High-Risk Children at Home and School Case management for students who are at high risk for negative health and academic outcomes Asthma education in the home and at school Mitigation supplies to reduce in home asthma triggers

36 LAUSD Asthma Program is Unique and Multi-Faceted School-centered School Nurses (RN and credentialed) provide: Home visits Asthma education (individual) Case management School-based asthma education classes (Open Airways [OAS], Fight Asthma Now [FAN]) Coordination with medical providers (Breathmobile, community clinics, hospitals)

37 LAUSD Asthma Program Managed More Than 1,000 Students Over Four Years Demographics of Participants 71% Hispanic/Latino 22% African American (11% of the District) Outcomes of Participants Improvement in symptoms Decreased ER visits Increase in appropriate use of asthma medication Increased use of an asthma action plan Decline in missed days of school: 14 to 5 days/year

38 Opportunities and Challenges to Running a School-Based Asthma Program Limited school calendar for school nurses to provide services (breaks, furloughs, etc) Priority on school campus is education and academics (mandatory testing dates) Families have other pressing priorities that decrease compliance Medical providers have limited knowledge, skills and motivation (reimbursement) to provide: Asthma Action Plan Spirometry Peak Flow- instructions, equipment

39 Using Existing Resources, Leveraging Relationships Key to Success of Program Using resources within the school, including key personnel: School Administrators Pupil Attendance Counselors School Nurses Teachers School nurse access to students and their records Built-in trust with parents, and it is where the students are (90% U.S. students attend a public school)

40 Schools Provide Important Opportunities for Collaboration to Tackle Asthma School personnel nurses, administrators, teachers School-based asthma educational programs: OAS and Kickin Asthma, Fight Asthma Now Indoor Air Quality Improvement EPA s Tools for Schools Program Local Asthma Coalitions often include educational agencies Community clinics, health systems or health plans may offer provider education (e.g., Physician Asthma Care Education [PACE]) AAFA and other non-profits sponsor mobile asthma vans (Breathmobile )

41 Q&A Floyd J. Malveaux, M.D., Ph.D. Merck Childhood Asthma Network, Inc. (202) Leonard Jack, Jr., Ph.D., MSc. Xavier University (504) Tyra Bryant-Stephens, M.D. The Children s Hospital of Philadelphia (215) stephenst@ .chop.edu Yolanda Cuevas, RN, BSN, MAed, PHN, RCP LAUSD Nursing Services Asthma Program (213) Yolanda.cuevas@lausd.net

42 An Editorial Webinar Presented by ADVANCE for Respiratory Care & Sleep Medicine and the Merck Childhood Asthma Network, Inc. April 13, 2011

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