COMMUNITY HEALTH ADVISORY & INFORMATION NETWORK

(CHAIN) PROJECT

Needs Assessment CommitteeAngela Aidala, Maria Caban,

and Maiko YomogidaFebruary 3, 2011

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 School of Public Health

CHAIN has recruited 4 cohorts of PLWH/A- NYC I (1994-2002, n=968)- NYC II (2002-present, n=1114)- Tri-County I (2001-2007, n=482)

- Tri-County II (2008-present, n=360) A Technical Review Team (TRT) which includes

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

17 Year Highlights (1994 -2011)

2000+ PLWHA completed ave. 4+ interviews

850-item questionnaire

120 trained interviewers

150+ 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

Selecting CHAIN ParticipantsA 2-Step Process

Designed to enroll representative samples 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. non RW

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

-- Sequential enrollment

Recruiting CHAIN ParticipantsUnconnected to Care

NYC CHAIN includes small samples of PLWHA unconnected to care

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

• Referrals from CHAIN agency recruited participants

• Accompany Outreach Workers

• Open recruitment and screening in street and community settings

• 1994 (n=48) 1998 (n=24) 2002 (n=25)

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

Cohort composition closely tracks surveillance data/ RW client data

Collecting Information by Speaking with PLWHA

Comprehensive in-person 2hr+ interview Follow-up interviews approx. yearly Interviews in homes or agency settings Community-based interviewing team $35 incentive for every interview + referral

resource Strong community support with 80% - 90%

follow-up interview completion rate

Topics Covered Current health & mental health status Sociodemographic background Family life, housing, work, economic resources Sexual behaviors Outlook on life, stress, stigma Substance use behaviors History of medical and social services Utilization of medical and social services Medication use and adherence Service needs, satisfaction with services, barriers Social networks, social support Quality of life

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

Some 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 Clinical indicators

- Viral load undetectable/ detectable Age

- 20-34 yrs old / 35-49 yrs / 50+ yrs Geography

- Bronx, Brooklyn, Manhattan, Queens, Staten Island

Types of Analyses

Descriptive (rates, percentages, trends, mapping)

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 CareConduct studies to examine: Medical care, health, mental health, QOL outcomes

for PLWHA

Trend data – tracking change over time

Individual factors associated with outcomes

Service utilization associated with outcomes

Systemic factors associated with outcomes

Key resource for needs assessment – can show service system strengths and weaknesses

Outcome Measures

Appropriate medical care ARV and HAART utilization & adherence T-cell changes, viral load suppression Resolution of service need Health and mental health functioning Reduction of sex and drug risk behaviors Mortality

CHAIN Service Needs and Utilization: NYC Summary

NYCDOH took lead in defining revised set of service domains, needs and utilization measures

“Need” includes those currently using service

“Gap” = % without adequate service utilization among those with need for service

Minor differences in need definition between Tri-County and NYC

Compare 2006-2009 with earlier interview period 2001-2006

What is a Service Gap?

The difference between the “need” for service, and the receipt of service

Need may be “subjective,” in that client explicitly wants service (AKA “demand”) --Ex: “In the last 6 months, have you had a problem or

needed assistance with housing?”

Need may be “objective,” in that client’s circumstances suggest a need for a service, even if client doesn’t demand it -- Ex: Client has had at least one episode of homelessness,

being doubled up, or being unstably housed in past 6 mo.

Domain: Ambulatory Health CareService : HIV Primary Care

19

Trends in HIV Primary Care

Need for Service

Adequate Utilization

Always 100%

Domain: Ambulatory Health CareService : ARV Treatment Support

Trends in ARV Treatment Support

Need for Service Adequate Utilization

Domain: Case ManagementService : Social Service C.M.

Who Needs the Service?1. Poor mental health score on standardized measure2. In the last 6 months had an inpatient, emergency room or

mobile unit visit for psychiatric or mental health3. Being homeless or in unstable housing in the last 6 months4. During past year used cocaine, crack or heroin, OR5. During past 6 months heavy or problem drinking

Measure of Adequate UtilizationA case manager did one or more of the following in last 6 months:

-Revising or developing a plan for dealing with needs, -Referrals for social services,

-Help filling out forms for benefits or entitlements

Trends in Social Service C.M.

Need for Service Adequate Utilization

Domain: Case ManagementService : Medical C.M.

Who Needs the Service?1. No HIV primary care in the last 6 months

2. Stopped going or no visit to provider in the last 6 months

3. Missed more than one appointment in the last 6 months

4. No CD4 or VL test in the past 6 months, OR

5. Had any of the above problems at prior interviews AND had a case manager helped in getting or referring for medical services in the last 6 months

Measure of Adequate Utilization During the last 6 months a case manager helped in getting or referring for medical services

Trends in Medical C.M.

Need for Service Adequate Utilization

Domain: Mental HealthService : Professional Mental Health

Services Who Needs the Service? 1. Poor mental health score on standard measure 2. In the last 6 month had an inpatient, emergency room or mobile

unit visit for psychiatric or mental health, or3. In the last 6 months received counseling from a mental health

professional - psychiatrist, psychologist, therapist, or clinical social worker

Measure of Adequate Utilization

In the last 6 months received counseling from a mental health care professional or clinical social worker

Trends in Mental Health Services

Need for Service Adequate Utilization

Service: Alcohol or Drug Treatment

Trends in Alcohol or Drug TreatmentNeed for Service Adequate Utilization

Need Adequate Utilization HOUSING

Permanent Housing

(1) Homeless or unstably housed past six months OR (2) facing eviction or urgent need to move without resources to secure adequate housing past six months OR (3) received housing assistance past six months that resulted in resolution of need for permanent housing or great deal progress toward resolution

Received housing assistance past six months that resulted in resolution of need for permanent housing or great deal of progress toward resolution

FOOD

Food Services

(1) Did not have enough money in the household for food once in a while to very often in the last six months OR (2) went for a while day without anything to eat in the last 30 days OR (3) receiving food stamps OR (4) do not have unlimited access to a kitchen

Received one or more of the following services in the last six months: (1) Meals provided in a group setting, (2) prepared meals delivered to home, (3) received food voucher or food from a food pantry

Food and Housing ServicesNeed for Service Adequate Utilization

2006-2009

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, Maria Caban, MA, Melissa White, MSSW, and Maiko Yomogida of Columbia University’s Mailman School of Public Health, TRT members include Mary Ann Chiasson, DrPH, (Chair), Roberta Scheinmann, MPH, Public Health Solutions, Inc.; Jan Carl Park, MPA, Nina Rothschild, DrPH, Office of AIDS Policy and Community Planning; Mary Irvine, DrPH, Yoran Grant, PhD MPH, Daniel Weglein, MD, and Fabienne Laraque, MD MPH, 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, and Tom Petro, Westchester County Department of Health;, and Gregory Cruz.

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.