1. Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference March 19, 2011

2. Benjamin Ortiz, MD Assistant Professor of Clinical Pediatrics Assistant Attending, Department of Pediatrics Columbia University Medical Center- The Affiliation at Harlem Hospital Center Assistant Professor of Clinical Population & Family Health Mailman School of Public Health Co-Principal Investigator and Medical Director, HCZAI

3. Disclosure I have no relevant financial disclosures or conflicts of interest to reveal prior to this presentation I have no relevant financial disclosures or conflicts of interest to reveal prior to this presentation

4. Epidemiology of Childhood Asthma  7.1 million US children (9.4% prevalence)  In New York City ~10% prevalence  Hospitalizations down 8% citywide (2005-2008), approx 45% decrease since 1997  Disparities in low SES neighborhoods remain despite significant reductions (2008)  CH: nearly double city avg  HCZAI identified prevalence rate approx 30% (2003)  EH and SBx: more than double city avg

5. Overview Harlem Children’s Zone is a 100-square block area in Central Harlem Harlem Children’s Zone is a 100-square block area in Central Harlem HCZAI is a comprehensive childhood asthma program HCZAI is a comprehensive childhood asthma program  Collaborative partnerships  Home-based educational, environmental and social/legal interventions  Rigorous evaluation (internal and external)

6. Headquarters of

7. HCZAI Collaborators Harlem Children’s Zone, Inc. (CBO) Harlem Children’s Zone, Inc. (CBO) Columbia University Medical Center Columbia University Medical Center Harlem Hospital Center affiliation Harlem Hospital Center affiliation Mailman School of Public Health (HHPC) Mailman School of Public Health (HHPC) CU Graduate School of Architecture and Urban Planning CU Graduate School of Architecture and Urban Planning NYC Department of Health and Mental Hygiene NYC Department of Health and Mental Hygiene East & Central Harlem DPHO East & Central Harlem DPHO East Harlem Asthma Center of Excellence East Harlem Asthma Center of Excellence NYC Department of Education NYC Department of Education Brazelton Touchpoints TM Center Brazelton Touchpoints TM Center

8. HCZAI Funders Robin Hood Foundation Robin Hood Foundation National Institute of Environmental Health Sciences National Institute of Environmental Health Sciences American Legacy Foundation American Legacy Foundation Dyson Foundation (AAP Community Pediatrics) Dyson Foundation (AAP Community Pediatrics) AstraZeneca AstraZeneca NYC Department of Health & Mental Hygiene NYC Department of Health & Mental Hygiene

9. HCZAI Intervention Team Pediatric Allergy/Immunology specialist (Principal Investigator) Pediatric Allergy/Immunology specialist (Principal Investigator) General Pediatrician (Medical Director) General Pediatrician (Medical Director) Executive Director Executive Director 2 Nurse Clinicians (Clinical Coordinators) 2 Nurse Clinicians (Clinical Coordinators) Health Educator Health Educator Community Health Workers (4) Community Health Workers (4) Law firm support (Dewey LeBoeuf) Law firm support (Dewey LeBoeuf)

10. Initiative Goals Reduce school absenteeism due to asthma Reduce school absenteeism due to asthma Decrease unscheduled and emergency medical visits due to asthma Decrease unscheduled and emergency medical visits due to asthma Reduce rates of hospitalizations due to asthma Reduce rates of hospitalizations due to asthma Improve daily quality of life Improve daily quality of life

11. Program Design Screen every child age 0-12 years in the HCZ for asthma Screen every child age 0-12 years in the HCZ for asthma  Asthma-specific questionnaire  demographics  past diagnosis of asthma by MD/RN  source of health care and health insurance coverage  home tobacco exposure  consent for physical examination  Physical examination (hgt, wgt, auscultation)  Peak expiratory flow rate (PEFR) [age > 6yr]

12. Program Design Referrals from: Referrals from:  Local schools  7 HHC school-based clinics  20-30 elementary schools in Harlem (via nurses)  Other CBO’s  Local health department office  HHC Emergency Room, inpatient unit & clinics  Local medical providers  Other families…some of our best marketing agents

13. Survey Results 6274 surveys collected (through Feb 2010) 6274 surveys collected (through Feb 2010) 29.2% diagnosed with asthma 29.2% diagnosed with asthma 31.6% ever had sx’s c/w asthma 31.6% ever had sx’s c/w asthma 27% ever ER/urgent MD visit for asthma 27% ever ER/urgent MD visit for asthma 19.6% had smoker in home 19.6% had smoker in home In previous 12 months: In previous 12 months: 24.2% daytime sx's 24.2% daytime sx's 24.5% nighttime sx's 24.5% nighttime sx's 19.2% ER/urgent MD visit for asthma 19.2% ER/urgent MD visit for asthma

14. Survey Results 1832 identified with asthma 1832 identified with asthma Mean age 7.1 years Mean age 7.1 years 51.6% female 51.6% female 76.5% African-American 76.5% African-American 22.9% Latino 22.9% Latino 31% exposed to tobacco at home 31% exposed to tobacco at home

15. CW/HE Outreach Mechanisms Parent contact directly from surveys Parent contact directly from surveys School health provider insistence School health provider insistence Referrals from 3 rd parties Referrals from 3 rd parties Local health care providers, CBOs, partner agencies Local health care providers, CBOs, partner agencies LOTS OF PATIENCE LOTS OF PATIENCE Reticence to participate Reticence to participate “not really a problem” (i.e. disease chronicity is not seen) “not really a problem” (i.e. disease chronicity is not seen) “doesn’t take meds everyday” (who decided this?) “doesn’t take meds everyday” (who decided this?) Fear of revealing true home environment (“I don’t want intruders in my home” Fear of revealing true home environment (“I don’t want intruders in my home”

16. Enrollment and Intervention All enrollees have history of asthma (n=1415) All enrollees have history of asthma (n=1415) Baseline Interview (1 st step) Baseline Interview (1 st step)  Written consent prior to enrollment (HIPAA/IRB)  Community Workers & Health Educators  1 st opportunity for Asthma Education  Home assessments  Evaluation of every room in home  Home environmental interventions  Every 3-4 months  Psychosocial assessment

19. Enrollment and Intervention Follow-up home visits (every 3-4 months x 1yr) Follow-up home visits (every 3-4 months x 1yr)  Environmental inspection of each room  Primary care/ER use, hospitalizations (3 mo period)  School absences (2 week period)  Daily asthma symptoms (2 week period)  Replacement/supplementation of asthma tools  Psychosocial assessment Alternate phone calls with home visits every 3 months for another 1 year Alternate phone calls with home visits every 3 months for another 1 year

22. Baseline and Follow-Up Results Asthma symptoms reported in the last 14 days Baseline(n=950) 6 mos 12 mos 18 mos 24 mos p-value Child wheezing or chest tightness 64.0%47.4%40.0%35.0%29.1%<.0001 Child with night asthma symptoms 53.6%41.5%36.8%29.7%29.1%<.0001 Child missed school due to asthma 29.7%21.2%8.7%7.2%9.3%<.0001 Asthma symptoms in the last 3 months: Child made ER or unscheduled clinic visit 45.6%19.9%16.8%12.2%10.1%<.0001 Child hospitalized 10.0%3.8%1.2%1.2%1.7%<.0001 Reported use of asthma management strategies: Child took any preventive asthma meds 46.9%57.2%59.4%62.9%62.9%<.0001

23. Environmental Findings: Pre & Post Intervention Baseline(n=950) 6 months 12 months 18 months 24 months p-value Living Room Triggers Dust (Living Room) 64.0%48.5%47.3%50.6%58.2%<.0001 Bathroom Triggers Mold (Bathroom) 15.0%6.9%6.8%3.0%3.3%<.0001 Pest Triggers Mice23.4%18.0%20.3%15.6%15.7%0.01 Roaches57.2%62.3%58.0%63.3%56.9%0.14 Spray Bombs 6.7%1.0%2.5%2.1%2.0%<.0001 Other Triggers Smoking13.3%7.2%8.9%5.1%2.6%<.0001 Perfume14.2%1.6%3.6%1.7%2.0%<.0001

24. Academic Activities Publications Publications  MMWR January 2005  AJPH February 2005  American Planning Association January 2006  Journal of Urban Health May 2006

25. Academic Activities National presentations National presentations  National Hispanic Medical Association  Harvard University School of Public Health  National Medical Association  NIH National Conference on Asthma  Pediatric Academic Society (platform session)  American College of Chest Physicians  American Academy of Pediatrics  UCSF-Fresno State Childhood Asthma Leadership Summit  Council on Social Work Education  Spanish American Medical & Dental Society of NY  Orlando Children’s Hospital  Wisconsin Asthma Coalition  Florida International University School of Medicine  US Department of Health and Human Services, Office of Minority Health  National Institute of Environmental Health Sciences

26. Conclusions Childhood asthma prevalence in HCZ much higher (30.4%) than predicted Childhood asthma prevalence in HCZ much higher (30.4%) than predicted Intensive home-based interventions have reduced: Intensive home-based interventions have reduced:  daytime asthma symptoms by 55% (over 24 mo period)  nighttime asthma symptoms by 46%  school absences by 69%  ER visits by 78%  hospitalizations by 83%  Increased controller use by 34%

27. Conclusions Environmental interventions have reduced: Environmental interventions have reduced: Indoor dust exposure by 9% Indoor dust exposure by 9% Indoor mold exposure by 78% Indoor mold exposure by 78% Home tobacco smoke exposure by 81% Home tobacco smoke exposure by 81%

28. Recommendations Home visiting model effective when culturally & linguistically appropriate education is provided Home visiting model effective when culturally & linguistically appropriate education is provided Measurable reductions in ER visits, hospitalizations and school absences are achievable by mitigating behavioral and environmental triggers Measurable reductions in ER visits, hospitalizations and school absences are achievable by mitigating behavioral and environmental triggers Schools & public health experts must be strong partners in any community-based effort to identify children with poorly controlled asthma Schools & public health experts must be strong partners in any community-based effort to identify children with poorly controlled asthma Adapt case identification strategies as situations arise Adapt case identification strategies as situations arise

29. Recommendations Educating primary care providers on best practices in asthma management is a key component of community-based asthma case management Educating primary care providers on best practices in asthma management is a key component of community-based asthma case management Medical-legal partnerships add tremendous value in addressing the social and environment determinants of poorly controlled asthma in poor, urban settings Medical-legal partnerships add tremendous value in addressing the social and environment determinants of poorly controlled asthma in poor, urban settings

30. Recommendations Navigation of relationship with community partners Navigation of relationship with community partners Missions may not be the same (CBO vs. academia) Missions may not be the same (CBO vs. academia) Need to suppress our academic egotism Need to suppress our academic egotism It’s OK to share information and data It’s OK to share information and data Memorandum of Understanding is important Memorandum of Understanding is important Share responsibilities (marketing, evaluation, etc.) Share responsibilities (marketing, evaluation, etc.) Think equally...everyone needs to be equal, valued partner Think equally...everyone needs to be equal, valued partner

31. Recommendations Keep staff happy Keep staff happy Competitive salary & benefits Competitive salary & benefits Provide opportunities for professional growth Provide opportunities for professional growth Recruit from the community Recruit from the community Maintain close working relationship with funders Maintain close working relationship with funders Start small and expand as resources (human, financial) allow Start small and expand as resources (human, financial) allow Develop relationships with community stakeholders Develop relationships with community stakeholders Schools Schools Churches Churches Community centers Community centers

32. Recommendations Evaluation!!! Evaluation!!! Internal and external capacity (big and small views) Internal and external capacity (big and small views) Frequent assessments of major program outcomes Frequent assessments of major program outcomes Qualitative measures are important as well Qualitative measures are important as well Perspectives of participants (focus groups) Perspectives of participants (focus groups) Perspectives of referring sources Perspectives of referring sources Perspectives of healthcare providers Perspectives of healthcare providers Make systematic changes as necessary (for us, building internal database that integrates with external one) Make systematic changes as necessary (for us, building internal database that integrates with external one) Disseminate results quickly Disseminate results quickly

33. Recommendations Get out there Get out there Go to homes, schools and community centers Go to homes, schools and community centers Educate everywhere you can Educate everywhere you can Provide the best service Provide the best service Say “Please” and “Thank You” Say “Please” and “Thank You”