COMMUNITY HEALTH ADVISORY & INFORMATION NETWORK (CHAIN) PROJECT NYC HIV PLANNING COUNCIL Needs Assessment Committee Angela Aidala April 1, 2008.

COMMUNITY HEALTH ADVISORY & INFORMATION NETWORK

(CHAIN) PROJECT

NYC HIV PLANNING COUNCIL Needs Assessment Committee

Angela Aidala April 1, 2008

Introduction: Planning Questions

What services do HIV+ persons need?

Where do they go for care?

What are their unmet needs/ service gaps?

What populations are underserved?

What works well, what doesn’t work?

What are the barriers and access issues?

WHERE SHOULD WE PUT OUR MONEY?

CHAIN PROJECT GOALS

To provide a profile of PLWH/A in New York City and the Tri-County Region

To assess the system of HIV care – both health and social services – from the perspective of people living with HIV

To report on unmet needs, service utilization trends, and outcomes to the Planning Council and its Committees

History of CHAIN Initially developed in 1993 as one of the Planning

Council’s evaluation resources

Contract with Columbia University Public Health

Over time CHAIN has recruited 3 representative cohorts of PLWH/A- NYC I (1994-2002, n=968)

- NYC II (2002-present, n=693)

- Tri-County (2001-present, n=298) A Technical Review Team (TRT) which includes

representatives of the Planning Council, Public Health Solutions, NYCDOHMH and WDOH oversees CHAIN

CHAIN Studies

CHAN Adult Cohort I

1994-2001

Adolescent Study

1995

Tri-County Cohort

2001 - 2007

The Unconnected

1995 & 1998 & 2003

Ancillary Service, 1999

Social Comorbidities, 2000

Ryan White Impact, 2001

Personnel Needs

1995 - 1996

CHAN Adult Cohort II

2002 - present

14 Year Highlights (1994-2008)

7,566 interviews with 2,176 respondents 850-item questionnaire 112 trained interviewers 100+ reports Multiple presentations to Planning

Council, Council Committees, PPG, HAWG, provider and community groups, professional conferences

Steps in the Process

Develop a research strategy Consult with stakeholders Develop research infrastructure Implement strategy Analyze & report on research findings Re-evaluate strategy Consult with stakeholders

The CHAIN Cohorts are Probability Samples

60,000 – 75,000 HIV+ adults in care

in NYC

(1994)

60,000 – 75,000 HIV+

adults in care in NYC

CHAIN = 700 PLWH

(1994)

Selecting CHAIN ParticipantsA 2-Step Process

1st step: random selection of service sites from listing of all agencies serving HIV clients• Medical and Social Service

• All Boroughs (or Counties)

• RW Funding vs. no RW

2nd step: agency staff help with random selection of clients• Random selection from client rosters

• Sequential enrollment

Recruiting CHAIN ParticipantsUnconnected to Care

Unconnected: Aware, no medical care, no case mgmt for 6+months

• Referrals from CHAIN agency recruited participants

• Accompany Outreach Workers

• Open recruitment and screening in street and community settings

Collecting Data

Comprehensive in-person interview Follow-up interviews annually Interviews in homes or agency settings Community-based interviewing team $25 incentive for every interview + referral

resource High retention rate: 80% - 95% of eligible

participants at each wave

Topics Covered

Current health & mental health status Family, housing, work, resources Outlook on life Risk behaviors – sex & drugs History and use of medical services History and use of social services Needs, satisfaction, barriers

Comparison of CHAIN Participants with Surveillance Data

Cumulative AIDS Cases, NYC† CHAIN COHORT 1

1995-2000 1994-2001

n 29,046 579

MALE

Non-Hispanic White 21% 21%

Non-Hispanic Black 43% 48%

Hispanic 34% 30%

Asian, NatAm, Other 2% 1%

FEMALE 11,714 389

Non-Hispanic White 9% 6%

Non-Hispanic Black 57% 63%

Hispanic 33% 31%

Asian, NatAm, Other 1% <1%

† NYC DOH HIV/ AIDS Surveillance Program

NYC Persons Livingwith HIV,

as of 6/30/03 11

Ryan White CAREAct Encounters, 3/2001 - 2/2002 22

CHAIN 2002 Cohort

6/2002-6/2004

Female Male Female Male Female Male33

Total N 10,104(35%)

18,995(65%)

10,765(39%)

16,962(61%)

278(40%)

415(60%)

White 8% 30% 9% 8% 6% 10%

Black 58% 36% 53% 53% 62% 47%

Latino 31% 30% 37% 37% 31% 41%

Other 3% 4% 2% 2% <1% (1) 2%1 HIV Epidemiology Program DOHMH2 HIV CARE Services.

Comparison of CHAIN Participants with Surveillance & RW Encounter Data

Analyze & Report

Prepare data for analysis Work with Council & staff to define topics Consult with stakeholders

- What emerging issues should be investigated?

- What subgroup comparisons?

Prepare draft of reports and get feedback Disseminate final reports

Ways of classifying PLWH/A

Gender• Male / female / transgender

Race / Ethnicity• White / Black / Latino / Other

HIV risk exposure group• MSM / PDU / MSM + PDU / Hetero & Other

Stage of illness• AIDS / HIV symptomatic / HIV asymptomatic

Age• 20-34/ 35-49/ 50+

Types of Analyses Descriptive (rates, percentages, trends

geomapping)

Analytical

• Are there group differences?

• Do certain models of care, interventions, or policies make a difference?

Multivariate analyses – considering the effects of many factors taken together

Assessing the System of Care

Trend data Outcome measures Individual factors associated with

outcomes Systemic factors associated with

outcomes

Outcome Measures

Appropriate medical care In-patient use & length of stay Recent opportunistic infection (OI) T-cell changes ARV and HAART utilization & adherence Health and mental health functioning Mortality

Individual Factors

Sociodemographics: gender, race/ethnicity, age, education, income, poverty area

Health: self-reported physical and mental health status, t-cell, OI, ARV, HAART

Risks: HIV risk behavior, drug use, unstable housing

Medical care: provider type, primary care characteristics, insurance coverage

Example:

Medicaid Trends by Provider

0

20

40

60

80

100

W1 W2 W3 W4 W5 W6 W7 W8

Priv MD

Desig AIDS Ctr

CHC

Percent of Respondents with Medicaid by Wave of Interview, 1994-2001

40

43

38

43

45

40

46

41

42

58

46

35

44

39

15 20 25 30 35 40 45 50 55 60 65

Bronx (n=149)

Brooklyn (n=157)

Manhattan (n=120)

Queens (n=83)

Staten Island (n=29)

Hetero (n=186)

MSM/PDU (n=39)

PDU (n=234)

MSM (n=100)

White (n=33)

Latino (n=213)

Black (n=304)

Female (n=218)

Male (n=335)

ETHNICITY**

GENDER

BOROUGH

HIV RISK

** significant (p<0.01)Percent reporting need

Example:

Estimating Mental Health Needs

Avera

ge

0

0.5

1

1.5

2

2.5

3

3.5

4

Primary Care

Self Perceived Need

Unstable Housing

Housing Services

Ever Drugs Weekly

Used Drugs 12m

Prof Drug Tx

Self-Help Drug Tx

Case Mgmt SSvc

No Insurance

Example:

Increasing the Odds of Accessing MH Services among Clients with Service Need

The Value of CHAIN Patterns and proportions we see in the

sample can be used as estimates for the broader HIV+ population

Over time data can show changes in needs as well as effects of services and system wide interventions

Provides broad range of evidence about service needs and outcomes from the point of view of persons living with HIV/AIDS

ACKNOWLEDGMENTS

A Technical Review Team (TRT) provides oversight for the CHAIN Project. In addition to Peter Messeri, PhD, Angela Aidala, PhD, Gunjeong Lee, PhD, and Maria Caban, MA, of Columbia University’s Mailman School of Public Health, TRT members include Mary Ann Chiasson, DrPH, Public Health Solutions, Inc. (Chair); Jan Carl Park, MPA, Nina Rothschild, DrPH, Office of AIDS Policy and Community Planning; Clarissa Silva, MSW, Daniel Weglein, MD, and Fabienne Laraque, MD, Office of Evaluation and Quality Assurance; Ellen Wiewel, PhD, HIV Epidemiology and Field Services Program and JoAnn Hilger, Director, Ryan White Services, New York City Department of Health and Mental Hygiene; Julie Lehane, PhD, Westchester County Department of Health; Jennifer Irwin, MPH, Roberta Scheinmann, MPH, Public Health Solutions.

CHAIN reports are solely the responsibility of the researchers and do not necessarily represent the official views of the U.S. Health Resources and Services Administration, the City of New York, or Public Health Solutions. I