Practicing Out of the Box: The Research Challenges of Caring

for HIV+ Substance Users

Chinazo Cunningham, MD

Division of General Internal Medicine

Dept of Family and Social Medicine

MMC/AECOM

A community perspective

• Background & Programs

• Research/Evaluation – Evaluation of medical outreach– Self report vs. medical records

• Partnership with the community & harm reduction– Benefits and challenges– Lessons learned

Background

• Montefiore Medical Center

• CitiWide Harm Reduction– CBO serving HIV-infected drug users living in

SRO hotels in NYC– Started as needle exchange program in 1994,

now offers numerous programs – Collaboration with Montefiore since 1998

• Medical care/outreach • Research/evaluation

CitiWide’s programs

• Outreach in SRO hotels• Needle exchange• Case management• Health services• Mental wellness• Support groups• Peer education

• Housing • Holistic health• Transportation• Clothing, showers,

meals• Research/Evaluation

Health Services Program

Providers Locations Services2-3 MDs (internists) CitiWide’s drop-in center HIV primary care

1 NP Patient’s SRO hotel room

Acute care

1 PA CHCC Gyn care

1 program admin Vaccinations

1 admin assistant Hep C eval & tx

2 outreach workers Referrals to medical specialties

Referrals to non-medical services

SRO Hotel ResidentsCharacteristic %

Age (mean) 45 yrs

Male 72

Race: Black 59

Hispanic 30

White/other 11

Heterosexual 79

< High school education 49

Income < $8000/yr 90

Medicaid 83

Drugs: Cocaine/crack 49

Heroin/opioids 21

Have regular HIV provider 85

Research & Evaluation

Objectives / Model

Engagement in HIV Primary Care•HIV ambulatory visits•HIV tests (VL, CD4) •HIV meds (ART, PCP & MAC prophylaxis)

Health-related characteristics•HIV disease severity•Mental health•Substance use

Patient characteristics•Trust•Health beliefs•Social support

Pt-Provider dynamic•Cultural concordance•Relationship with provider

Community outreach

Evaluation of a Medical Outreach Program

• Background– Marginalized HIV+ populations have less access to

care, poor health outcomes– Outreach programs aim to improve access– Few programs evaluated

• Objectives– To evaluated a medical outreach program that targets

HIV+ SRO hotel residents in NYC – To examine patient- and program-related factors

associated with keeping medical appointments

Methods• Examined 2781 medical appt records (2003-2005)

– CitiWide and Montefiore databases

• Patient-related factors– sociodemographic info

• Program-related factors– Appt type: same day/walk-in vs. future appt– Appt location: CitiWide vs. SRO hotel vs. CHCC– Provider making appt: medical vs. non-medical

• Analysis– Chi-square, regression analysis

Future appts kept

Same day appts kept

Total 357 (23.3)* 309 (41.9)

Location of appt

CitiWide 245 (28.1)* 309 (41.9)

SRO hotel 32 (10.6) --

CHCC 80 (22.1) --

Person making appt

Medical provider 143 (18.1)* 21 (30.4)*

Non-medical provider 214 (28.7) 288 (43.1)

Summary

• Overall 29% of appts were kept

• Program characteristics, NOT patient characteristics assoc with kept appts

• Appts kept more often when:– At CitiWide’s drop-in center– Same day / walk-in– Made by non-medical provider

Implications

• Changed Health Services Program to provide more appts at CitiWide and same day/walk-in

• Medical community must examine program-related factors (not just pt-related factors) in delivery of care to marginalized HIV+ populations– Same day access– “One stop shopping”

SRO Hotel ResidentsCharacteristic %

Age (mean) 45 yrs

Male 72

Race: Black 59

Hispanic 30

White/other 11

Heterosexual 79

< High school education 49

Income < $8000/yr 90

Medicaid 83

Drugs: Cocaine/crack 49

Heroin/opioids 21

Have regular HIV provider 85

Comparison of self report vs. medical records HIV utilization measures

• Background– Numerous studies examine HIV health services

using self-reported outcomes– Few studies examined validity of these

outcomes in marginalized populations– Crucial to understand validity of outcome

measures for program evaluation

• Objective: To examine agreement between self-report and medical record HIV health services utilization measures

Methods• Cross-sectional study design• Sample

– 522 HIV+ individuals living in 14 SRO hotels in NYC

• Data– Self report from ACASI– Medical record extraction by MD

• Variables– HIV-related ambulatory care visits (0, 1, >2 visits)

– HIV lab markers (CD4, VL)

– HIV-related medications (ART, PCP, MAC)

• Analysis– percent agreement & Kappa statistic

Results

Self-report

(%)

Medical records

(%)

Agreement

(%)

Kappa

> 2 outpt visits/6 mos 84.7 56.9 54.9 0.09

Taking ART 69.8 64.7 75.0 0.43

Taking PCP prophylaxis 50.4 34.5 69.0 0.38

Taking MAC prophylaxis 22.5 14.5 75.8 0.23

Results

Self-report

(%)

Medical records

(%)

Agreement

(%)

Kappa

Had CD4 count performed

81.7 73.2 64.8 0.06

Had VL performed 81.9 63.9 61.3 0.06

CD4 count value (mean, cells/mm3)

357 329 81.3 0.71

Undetectable VL (undetectable)

42.2 34.9 75.9 0.49

Conclusions• Agreement between self-report and medical

records was: – Poor for ambulatory visits ( = 0.09) – Poor to fair for medication use ( = 0.23-0.43)– Poor for lab tests performed ( = 0.06)– Good for CD4 count value ( = 0.71)

• Most disagreement was from patient over-reporting • When examining health services utilization in

marginalized populations, the use of self-reported measures as outcomes raises concerns.

Partnership with the community & harm reduction

Benefits to working with a CBO

• Large number of community members in one place

• “Special population” not in clinical settings

• Facilitate trust • Direct access to community (SRO hotels)

• Attractive to funders (community-based participatory research)

Challenges to working with a CBO

• Different priorities – research vs. service

• Philosophical clash – traditional medical system vs. harm reduction*

• Power, money, resources– large academic medical center vs. small CBO

• Supervision / oversight– Two different geographic locations

• Structural issues– Computers, heating, supplies, payroll, etc

• Staffing– professionals vs. para-professionals

Harm Reduction vs. Medical Model

Harm Reduction Medicine

Structure Inclusive, community decisions

Hierarchical chain of command

System Low threshold High threshold

Provider role Provides info, collaborative decision making

Prescribes treatment

Client role Makes informed decisions Complies with treatment

Locus of control

Client-centered Physician-centered

Lesson Learned - Redefine Health

• Health is NOT the absence of disease

• Biopsychosocial model including…– drugs

– housing

– support system

– finances

– violence

– criminal justice issues…

• Life priorities of HIV+ IDUs– Only 37% ranked HIV as most important– Top priorities: housing, money, safety from violence

Mizuno

Lessons Learned – Redefine Goals and Success

• Success is NOT just: – Undetectable viral load– Abstinence from drug use

• Success also includes:– Making it to appointments– Preventative care (PCP/MAC prophylaxis,

vaccinations, PAP smears, PPD)

– Less, safer, more controlled drug use– Improvement in non-medical areas (housing,

support system, criminal activity, etc.)

Lessons Learned

• Working with a CBO is an investment• Integration into CBO

– legitimizes the research – notice problems before they become too big– “buy-in” from other CBO staff

• Difficult to conduct research in setting where it is not a priority

• Need face-to-face time and close oversight of research staff

• Communication and transparency