1. COMMUNITY HEALTH ADVISORY & INFORMATION NETWORK (CHAIN) PROJECT Needs Assessment Committee Angela Aidala, Maria Caban, and Maiko Yomogida February 3, 2011

2. 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?

3. 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

4. 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

5. 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

6. 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

7. Selecting CHAIN Participants A 2-Step Process Designed to enroll representative samples 1 st 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 2 nd step: agency staff help with random selection of clients -- Random selection from client rosters -- Sequential enrollment

8. Recruiting CHAIN Participants Unconnected 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)

9. Comparison of CHAIN Participants with Surveillance & RW Encounter Data Cohort composition closely tracks surveillance data/ RW client data

10. 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

11. 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

12. 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

13. 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

14. 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

15. Assessing the System of Care Conduct 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

16. 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

17. 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

18. 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.

19. Domain: Ambulatory Health Care Service : HIV Primary Care Who Needs the Service? All Individuals living with HIV/AIDS Measure of Adequate Utilization One or more visits to HIV Primary Care Physician in last six months 19

20. Trends in HIV Primary Care Need for Service Adequate Utilization  Always 100% 20

21. Domain: Ambulatory Health Care Service : ARV Treatment Support Who Needs the Service? 1. CD4 count< 200 & not on ARV 2. Not completely adherent to ARV meds or 3. Receiving support services for ARV meds Measure of Adequate Utilization Receiving support services for taking ARV’s from professional providers

22. Trends in ARV Treatment Support Need for ServiceAdequate Utilization

23. Domain: Case Management Service : Social Service C.M. Who Needs the Service? 1. Poor mental health score on standardized measure 2. In the last 6 months had an inpatient, emergency room or mobile unit visit for psychiatric or mental health 3. Being homeless or in unstable housing in the last 6 months 4. During past year used cocaine, crack or heroin, OR 5. During past 6 months heavy or problem drinking Measure of Adequate Utilization A 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

24. Trends in Social Service C.M. Need for ServiceAdequate Utilization

25. Domain: Case Management Service : 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

26. Trends in Medical C.M. Need for ServiceAdequate Utilization

27. Domain: Mental Health Service : 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, or 3. 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

28. Trends in Mental Health Services Need for Service Adequate Utilization

29. Service: Alcohol or Drug Treatment Who Needs the Service? 1. During past year used cocaine, crack or heroin, 2. During past 6 months heavy or problem drinking, or 3. Reported receiving drug or alcohol treatment was important Measure of Adequate Utilization In last 6 months received any form of treatment for alcohol or drug use, including AA/NA

30. Trends in Alcohol or Drug Treatment Need for ServiceAdequate Utilization

31. NeedAdequate 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

32. Food and Housing Services Need for ServiceAdequate Utilization 2006-2009

33. 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

34. 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.