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

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Page 1: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Community-Based Community-Based Participatory Research Participatory Research

Reduces Asthma Morbidity in Reduces Asthma Morbidity in the Inner-Citythe Inner-City

The Harlem Children’s Zone Asthma The Harlem Children’s Zone Asthma InitiativeInitiative

NHMA-15NHMA-15thth Annual Conference Annual Conference

March 19, 2011March 19, 2011

Page 2: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Benjamin Ortiz, Benjamin Ortiz, MDMD

Assistant Professor of Clinical PediatricsAssistant Professor of Clinical PediatricsAssistant Attending, Department of PediatricsAssistant Attending, Department of Pediatrics

Columbia University Medical Center-Columbia University Medical Center-The Affiliation at Harlem Hospital CenterThe Affiliation at Harlem Hospital Center

Assistant Professor of Clinical Population & Assistant Professor of Clinical Population & Family HealthFamily Health

Mailman School of Public HealthMailman School of Public Health

Co-Principal Investigator andCo-Principal Investigator andMedical Director, HCZAIMedical Director, HCZAI

Page 3: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

DisclosureDisclosure

I have no relevant financial I have no relevant financial disclosures or conflicts of interest to disclosures or conflicts of interest to reveal prior to this presentationreveal prior to this presentation

Page 4: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Epidemiology of Childhood Epidemiology of Childhood AsthmaAsthma

7.1 million US children (9.4% 7.1 million US children (9.4% prevalence)prevalence)

In New York City ~10% prevalenceIn New York City ~10% prevalence Hospitalizations down 8% citywide (2005-Hospitalizations down 8% citywide (2005-

2008), approx 45% decrease since 19972008), approx 45% decrease since 1997 Disparities in low SES neighborhoods Disparities in low SES neighborhoods

remain despite significant reductions remain despite significant reductions (2008)(2008)

CH: nearly double city avgCH: nearly double city avg HCZAI identified prevalence rate approx 30% (2003)HCZAI identified prevalence rate approx 30% (2003)

EH and SBx: more than double city avgEH and SBx: more than double city avg

Page 5: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

OverviewOverview Harlem Children’s Zone is a 100-Harlem Children’s Zone is a 100-

square block area in Central Harlemsquare block area in Central Harlem

HCZAI is a comprehensive childhood HCZAI is a comprehensive childhood asthma programasthma program Collaborative partnershipsCollaborative partnerships Home-based educational, environmental Home-based educational, environmental

and social/legal interventionsand social/legal interventions Rigorous evaluation (internal and Rigorous evaluation (internal and

external)external)

Page 6: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Headquarters of

Page 7: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

HCZAI CollaboratorsHCZAI Collaborators Harlem Children’s Zone, Inc. (CBO)Harlem Children’s Zone, Inc. (CBO) Columbia University Medical CenterColumbia University Medical Center

Harlem Hospital Center affiliationHarlem Hospital Center affiliation Mailman School of Public Health Mailman School of Public Health

(HHPC)(HHPC) CU Graduate School of Architecture and CU Graduate School of Architecture and

Urban Planning Urban Planning NYC Department of Health and Mental NYC Department of Health and Mental

HygieneHygiene East & Central Harlem DPHOEast & Central Harlem DPHO East Harlem Asthma Center of East Harlem Asthma Center of

ExcellenceExcellence NYC Department of EducationNYC Department of Education Brazelton TouchpointsBrazelton TouchpointsTMTM Center Center

Page 8: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

HCZAI FundersHCZAI Funders Robin Hood FoundationRobin Hood Foundation National Institute of Environmental National Institute of Environmental

Health Sciences Health Sciences American Legacy FoundationAmerican Legacy Foundation Dyson Foundation (AAP Community Dyson Foundation (AAP Community

Pediatrics)Pediatrics) AstraZenecaAstraZeneca NYC Department of Health & Mental NYC Department of Health & Mental

HygieneHygiene

Page 9: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

HCZAI Intervention TeamHCZAI Intervention Team

Pediatric Allergy/Immunology specialist Pediatric Allergy/Immunology specialist (Principal Investigator)(Principal Investigator)

General Pediatrician (Medical Director)General Pediatrician (Medical Director) Executive DirectorExecutive Director 2 Nurse Clinicians (Clinical 2 Nurse Clinicians (Clinical

Coordinators)Coordinators) Health EducatorHealth Educator Community Health Workers (4)Community Health Workers (4) Law firm support (Dewey LeBoeuf)Law firm support (Dewey LeBoeuf)

Page 10: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Initiative GoalsInitiative Goals

Reduce school absenteeism due to Reduce school absenteeism due to asthmaasthma

Decrease unscheduled and Decrease unscheduled and emergency medical visits due to emergency medical visits due to asthmaasthma

Reduce rates of hospitalizations Reduce rates of hospitalizations due to asthmadue to asthma

Improve daily quality of lifeImprove daily quality of life

Page 11: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Program DesignProgram Design

Screen every child age 0-12 years in Screen every child age 0-12 years in the HCZ for asthmathe HCZ for asthma Asthma-specific questionnaireAsthma-specific questionnaire

demographicsdemographics past diagnosis of asthma by MD/RNpast diagnosis of asthma by MD/RN source of health care and health insurance source of health care and health insurance

coveragecoverage home tobacco exposurehome tobacco exposure consent for physical examinationconsent for physical examination

Physical examination (hgt, wgt, Physical examination (hgt, wgt, auscultation)auscultation)

Peak expiratory flow rate (PEFR) [age > Peak expiratory flow rate (PEFR) [age > 6yr]6yr]

Page 12: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Program DesignProgram Design Referrals from:Referrals from:

Local schoolsLocal schools 7 HHC school-based clinics7 HHC school-based clinics 20-30 elementary schools in Harlem (via nurses)20-30 elementary schools in Harlem (via nurses)

Other CBO’sOther CBO’s Local health department officeLocal health department office HHC Emergency Room, inpatient unit & HHC Emergency Room, inpatient unit &

clinicsclinics Local medical providersLocal medical providers Other families…some of our best marketing Other families…some of our best marketing

agentsagents

Page 13: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Survey ResultsSurvey Results

6274 surveys collected (through Feb 6274 surveys collected (through Feb 2010)2010) 29.2% diagnosed with asthma29.2% diagnosed with asthma 31.6% ever had sx’s c/w asthma31.6% ever had sx’s c/w asthma 27% ever ER/urgent MD visit for asthma27% ever ER/urgent MD visit for asthma 19.6% had smoker in home19.6% had smoker in home In previous 12 months:In previous 12 months:

24.2% daytime sx's24.2% daytime sx's 24.5% nighttime sx's24.5% nighttime sx's 19.2% ER/urgent MD visit for asthma19.2% ER/urgent MD visit for asthma

Page 14: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Survey ResultsSurvey Results 18321832 identified with asthma identified with asthma

Mean age 7.1 yearsMean age 7.1 years 51.6% female51.6% female 76.5% African-American76.5% African-American 22.9% Latino22.9% Latino 31% exposed to tobacco at home31% exposed to tobacco at home

Page 15: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

CW/HE Outreach CW/HE Outreach MechanismsMechanisms

Parent contact directly from surveysParent contact directly from surveys School health provider insistenceSchool health provider insistence Referrals from 3Referrals from 3rdrd parties parties

Local health care providers, CBOs, Local health care providers, CBOs, partner agenciespartner agencies

LOTS OF PATIENCELOTS OF PATIENCE Reticence to participateReticence to participate

““not really a problem” (i.e. disease chronicity is not not really a problem” (i.e. disease chronicity is not seen)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 Fear of revealing true home environment (“I don’t

want intruders in my home”want intruders in my home”

Page 16: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Enrollment and Enrollment and InterventionIntervention

All enrollees have history of asthma All enrollees have history of asthma (n=1415)(n=1415)

Baseline InterviewBaseline Interview (1 (1stst step) step) Written consent prior to enrollment Written consent prior to enrollment

(HIPAA/IRB)(HIPAA/IRB) Community Workers & Health EducatorsCommunity Workers & Health Educators 11stst opportunity for Asthma Education opportunity for Asthma Education Home assessmentsHome assessments

Evaluation of every room in homeEvaluation of every room in home Home environmental interventionsHome environmental interventions Every 3-4 monthsEvery 3-4 months

Psychosocial assessmentPsychosocial assessment

Page 17: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference
Page 18: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference
Page 19: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Enrollment and Enrollment and InterventionIntervention

Follow-up home visits (every 3-4 months x Follow-up home visits (every 3-4 months x 1yr)1yr) Environmental inspection of each roomEnvironmental inspection of each room Primary care/ER use, hospitalizations (3 mo Primary care/ER use, hospitalizations (3 mo

period)period) School absences (2 week period)School absences (2 week period) Daily asthma symptoms (2 week period)Daily asthma symptoms (2 week period) Replacement/supplementation of asthma toolsReplacement/supplementation of asthma tools Psychosocial assessmentPsychosocial assessment

Alternate phone calls with home visits Alternate phone calls with home visits every 3 months for another 1 yearevery 3 months for another 1 year

Page 20: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference
Page 21: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference
Page 22: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Baseline and Follow-Up Baseline and Follow-Up ResultsResults

Asthma symptoms Asthma symptoms reported in the last reported in the last 14 days14 days

BaselineBaseline(n=950)(n=950)

6 mos6 mos 12 12 momoss

18 18 momoss

24 mos24 mos p-p-valvalueue

Child wheezing or chest Child wheezing or chest tightnesstightness 64.0%64.0% 47.4%47.4% 40.0%40.0% 35.0%35.0% 29.1%29.1% <.000<.000

11

Child with night asthma Child with night asthma symptomssymptoms 53.6%53.6% 41.5%41.5% 36.8%36.8% 29.7%29.7% 29.1%29.1% <.000<.000

11

Child missed school due Child missed school due to asthmato asthma 29.7%29.7% 21.2%21.2% 8.7%8.7% 7.2%7.2% 9.3%9.3% <.000<.000

11

Asthma symptoms in Asthma symptoms in the last 3 months:the last 3 months:

Child made ER or Child made ER or unscheduled clinic unscheduled clinic visitvisit

45.6%45.6% 19.9%19.9% 16.8%16.8% 12.2%12.2% 10.1%10.1% <.000<.00011

Child hospitalizedChild hospitalized 10.0%10.0% 3.8%3.8% 1.2%1.2% 1.2%1.2% 1.7%1.7% <.000<.00011

Reported use of Reported use of asthma management asthma management strategies:strategies:

Child took any Child took any preventive asthma preventive asthma medsmeds

46.9%46.9% 57.2%57.2% 59.4%59.4% 62.9%62.9% 62.9%62.9% <.000<.00011

Page 23: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Environmental Findings:Environmental Findings:Pre & Post InterventionPre & Post Intervention

BaselinBaselinee

(n=950(n=950))

6 6 montmont

hshs

12 12 montmonthshs

18 18 monmonthsths

24 24 montmonthshs

p-p-valvalueue

Living Room Living Room TriggersTriggers

Dust (Living Dust (Living Room)Room)

64.0%64.0% 48.5%48.5% 47.3%47.3% 50.6%50.6% 58.2%58.2% <.000<.00011

Bathroom Bathroom TriggersTriggers

Mold (Bathroom)Mold (Bathroom) 15.0%15.0% 6.9%6.9% 6.8%6.8% 3.0%3.0% 3.3%3.3% <.000<.00011

Pest TriggersPest Triggers

MiceMice 23.4%23.4% 18.0%18.0% 20.3%20.3% 15.6%15.6% 15.7%15.7% 0.010.01

RoachesRoaches 57.2%57.2% 62.3%62.3% 58.0%58.0% 63.3%63.3% 56.9%56.9% 0.140.14

Spray BombsSpray Bombs 6.7%6.7% 1.0%1.0% 2.5%2.5% 2.1%2.1% 2.0%2.0% <.000<.00011

Other TriggersOther Triggers

SmokingSmoking 13.3%13.3% 7.2%7.2% 8.9%8.9% 5.1%5.1% 2.6%2.6% <.000<.00011

PerfumePerfume 14.2%14.2% 1.6%1.6% 3.6%3.6% 1.7%1.7% 2.0%2.0% <.000<.00011

Page 24: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Academic ActivitiesAcademic Activities

PublicationsPublications MMWR January 2005MMWR January 2005 AJPH February 2005AJPH February 2005 American Planning Association January American Planning Association January

20062006 Journal of Urban Health May 2006Journal of Urban Health May 2006

Page 25: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

Academic ActivitiesAcademic Activities National presentationsNational presentations

National Hispanic Medical AssociationNational Hispanic Medical Association Harvard University School of Public HealthHarvard University School of Public Health National Medical AssociationNational Medical Association NIH National Conference on AsthmaNIH National Conference on Asthma Pediatric Academic Society (platform session)Pediatric Academic Society (platform session) American College of Chest PhysiciansAmerican College of Chest Physicians American Academy of PediatricsAmerican Academy of Pediatrics UCSF-Fresno State Childhood Asthma Leadership SummitUCSF-Fresno State Childhood Asthma Leadership Summit Council on Social Work EducationCouncil on Social Work Education Spanish American Medical & Dental Society of NYSpanish American Medical & Dental Society of NY Orlando Children’s HospitalOrlando Children’s Hospital Wisconsin Asthma CoalitionWisconsin Asthma Coalition Florida International University School of MedicineFlorida International University School of Medicine US Department of Health and Human Services, Office of US Department of Health and Human Services, Office of

Minority HealthMinority Health National Institute of Environmental Health SciencesNational Institute of Environmental Health Sciences

Page 26: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

ConclusionsConclusions Childhood asthma prevalence in HCZ much Childhood asthma prevalence in HCZ much

higher (higher (30.4%30.4%) than predicted) than predicted

Intensive home-based interventions have Intensive home-based interventions have reduced:reduced: daytime asthma symptoms by daytime asthma symptoms by 55% (over 24 mo 55% (over 24 mo

period)period) nighttime asthma symptoms by nighttime asthma symptoms by 46%46% school absences by school absences by 69%69% ER visits by ER visits by 78%78% hospitalizations by hospitalizations by 83%83%

Increased controller use by Increased controller use by 34%34%

Page 27: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

ConclusionsConclusions

Environmental interventions have Environmental interventions have reduced:reduced:• Indoor dust exposure by Indoor dust exposure by 99%%• Indoor mold exposure by Indoor mold exposure by 78%78%• Home tobacco smoke exposure by Home tobacco smoke exposure by 81%81%

Page 28: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

RecommendationsRecommendations Home visiting model effective when Home visiting model effective when culturally & culturally &

linguistically appropriatelinguistically appropriate education is education is providedprovided

Measurable reductions in ER visits, Measurable reductions in ER visits, hospitalizations and school absences hospitalizations and school absences are are achievableachievable by mitigating behavioral and by mitigating behavioral and environmental triggersenvironmental triggers

Schools & public health experts must be Schools & public health experts must be strong strong partnerspartners in any community-based effort to in any community-based effort to identify children with poorly controlled asthmaidentify children with poorly controlled asthma

AdaptAdapt case identification strategies as situations case identification strategies as situations arisearise

Page 29: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

RecommendationsRecommendations

Educating primary care providersEducating primary care providers on on best practices in asthma management is best practices in asthma management is a key component of community-based a key component of community-based asthma case managementasthma case management

Medical-legal partnershipsMedical-legal partnerships add add tremendous value in addressing the tremendous value in addressing the social and environment determinants of social and environment determinants of poorly controlled asthma in poor, urban poorly controlled asthma in poor, urban settings settings

Page 30: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

RecommendationsRecommendations

Navigation of relationship with community Navigation of relationship with community partnerspartners Missions may not be the same (CBO vs. Missions may not be the same (CBO vs.

academia)academia) Need to suppress our academic egotismNeed to suppress our academic egotism It’s OK to share information and dataIt’s OK to share information and data

Memorandum of Understanding is importantMemorandum of Understanding is important Share responsibilities (marketing, evaluation, Share responsibilities (marketing, evaluation,

etc.)etc.) Think equally...everyone needs to be equal, Think equally...everyone needs to be equal,

valued partnervalued partner

Page 31: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

RecommendationsRecommendations Keep staff happyKeep staff happy

Competitive salary & benefitsCompetitive salary & benefits Provide opportunities for professional growthProvide opportunities for professional growth Recruit from the communityRecruit from the community

Maintain close working relationship with Maintain close working relationship with fundersfunders

Start small and expand as resources (human, Start small and expand as resources (human, financial) allowfinancial) allow

Develop relationships with community Develop relationships with community stakeholdersstakeholders SchoolsSchools ChurchesChurches Community centersCommunity centers

Page 32: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

RecommendationsRecommendations

Evaluation!!!Evaluation!!! Internal and external capacity (big and small Internal and external capacity (big and small

views)views) Frequent assessments of major program Frequent assessments of major program

outcomesoutcomes Qualitative measures are important as wellQualitative measures are important as well

Perspectives of participants (focus groups)Perspectives of participants (focus groups) Perspectives of referring sourcesPerspectives of referring sources Perspectives of healthcare providersPerspectives of healthcare providers

Make systematic changes as necessary (for Make systematic changes as necessary (for us, building internal database that us, building internal database that integrates with external one)integrates with external one)

Disseminate results quicklyDisseminate results quickly

Page 33: Community-Based Participatory Research Reduces Asthma Morbidity in the Inner-City The Harlem Children’s Zone Asthma Initiative NHMA-15 th Annual Conference

RecommendationsRecommendations

Get out thereGet out there Go to homes, schools and community Go to homes, schools and community

centerscenters Educate everywhere you canEducate everywhere you can Provide the best serviceProvide the best service Say “Please” and “Thank You”Say “Please” and “Thank You”