PROVIDING ADHERENCE SUPPORT TO SPECIAL

POPULATIONS

Reaching, Engaging, and Retaining Elusive Individuals in Consistent Care

Debbie Indyk, Ph.D., M.S.

Mount Sinai School Of Medicine

Sporadic

• Occurring at irregular intervals; having no pattern or order.

• Appearing singly or at a widely scattered localities..

Statement of the Problem • Large numbers of individuals lack access to consistent

care;

• New approaches must be developed to locate and engage HIV-positive individuals who don’t come for ongoing care and services;

• HIV is one of a multitude of complex problems facing these individuals;

• Reducing barriers to care requires:

– patient-centered, multidisciplinary care;

– addressing seemingly non-medical patient priorities

– holistic care

– caring for the whole person, not just the disease

Questions and Challengesthat Shape the Formation of the Model

• Where can infected and high-risk individuals not

engaged in care be reached and served?• Who are they? What is their profile of need?• What harm reduction services can be offered to those

not ready to engage in care?• How can home-based services be linked to more

intensive services?• How can we measure effectiveness and replicability?

CHALLENGES

• Find critical masses of “high-risk” individuals, • Engage them through an aggressive harm

reduction model and • Link them to and support their retention in

appropriate levels of primary, specialty, complementary and preventive care, mental health services and clinical trials.

Reasons given for not being in care...

• “I did [go to the doctor] before I was incarcerated, but I never made it back.”

• “I just don’t care anymore.”• “There’s a two month wait for an appointment. If

they don’t want to see me...”• “I have other things bothering me. My 9 year-old

daughter was murdered last year.”• “I was going when I lived in Brooklyn, but I’m not in

Brooklyn anymore.”• “I don’t need any medicine. I’m not sick yet.”

A Harm Reduction Approach to Adherence

• To insure that clients have access to adherence support services at every point along the continuum of treatment adherence

• To involve clients in the creation of client-specific treatment adherence support plans, based on current knowledge and understanding about adherence

The Adherence Continuum Prevention-Care-Prevention

• Managing Illness

• Managing Wellness

• Managing Risk

Goals of Low Threshold Model

• Bringing individuals into care

• Keeping clients in care

• Reducing additional risk

• Linking Prevention and Care

Grassroots organizations and the public health system do reach individuals “below the surface,” but these services are sporadic, narrowly-focused, and lack continuity.

As a result, the majority of SRO residents are not

reached by any of the three systems and do not

receive the resources, prevention and care they

need to reduce the negative consequences of HIV

infection.

Where And How To Reach Individuals In Sporadic Care

ENTRY POINTS IN EXISTING CARE AND PUBLIC HEALTH SYSTEMS

M SE YD SI TC EA M L

GRASS-ROOTS

ORGAN-IZATIONS

P HU EB AL LI TC H

SYSTEM

AIDS AND IN CARE

EPISODICALLY AT-RISK AND IN

CRISIS

AWARE OF DIAGNOSIS, NOT CURRENTLY IN CARE

CHRONICALLY AT-RISK

INDIVIDUALS: RECEIVING EPISODIC CARE

IN NEED OF PROPHYLAXIS IN NEED OF RISK-REDUCTION

AND ADHERENCE SUPPORT

AT-RISK INDIVIDUALS AND THEIR SOCIAL NETWORKS

AWARE AND UNAWARE OF HIV STATUS

SOME RECEIVING HARM REDUCTION SERVICES FOR SUBSTANCE USE

INDIVIDUALS EPISODICALLY AT RISKINDIVIDUALS AGING INTO RISK

INDIVIDUALS CHRONICALLY AT-RISK BECAUSE OF ENVIRONMENTAL, PYSCHOSOCIAL OR MEDICAL RISK FACTORS

INTERVENTIONS TO

REDUCE HIV RISK

TERTIARY, SECONDARY,

PRIMARY RISK REDUCTION

EDUCATION

COUNSELING AND

TESTING

PREVENTIVE CASE

MANAGEMENT

SUPPORT GROUPS

WORKSHOPS

STD TREATMENT

PARTNER NOTIFICATION

VACCINATIONS

Distribution of Medicaid Sequence Numbers of

Active Clients

5<x<1010<X<1515<X<2020<x<2525<X<3030<X35

Transience of SRO Residency60 rooms

• 42 Rooms housed 84 clients

• 13 Rooms housed 39 clients

• 2 Rooms housed 8 clients

• 3 Rooms housed 10 clients

Health Bridge Clients Enrolled

• 370 Individuals

– 114 Currently Active

– 256 Closed

“Length of Stay”in Months of Closed Clients

0

20

40

60

80

100

120

140

160

180

<6 6<x<12 12<x<18 18<x<24 >24

#

REASONS FOR CLOSURE

• Care elsewhere 12• Deceased 18• Incarcerated 8• Left SRO 39• Inactivated by staff 22• Lost to f/u 15• Entered SNF 7• Rehoused 22

Number of Actions/ServicesAverage: 73 actions/client

n=114

0

5

10

15

20

25

30

35<

50

50<

x<99

100<

x<14

9

150<

x<19

9

200<

x<29

9

x>30

0

Clients

Months in Care(Active Clients)

0

5

10

15

20

25

30

35

40<

1

1<x<

6

6<x<

12

12<

x<18

18<

x<24

>24

# Clients

The SRO Health Bridge Project:What it means...

On-Site Low Threshold Care – No travel time or cost for patient;– Familiar, non-threatening environment; – Provides continuum from urgent care to comprehensive

primary care and follow-up.– Allows provider to meet patients at different stages of

readiness to receive care;– Escort/transportation voucher to off-site care;– Social network nearby;

Holistic Model•Treats the whole person, not just their disease;•Prevention/health education measures are made relevant to and provided within the context of patients’ lives;•Harm reduction approach which opens the door to further education, treatment, and behavior change.

Participant Centered •Staff learn from PLWAs in the context of their lives;•Designed to meet patients’ self-perceived needs and priorities first; •De-emphasizes unequal power relationship and increases opportunities to develop trust.

Services Offered to Engage

•Home-based Assessment/Triage Visits•Public Health Outreach, STD Screening•Routine Medical Care On-Site•Flu Vaccine•Dental Care•Urgent Care On-Site•Low Threshold Mental Health Services•Follow-Up Home Visits for Missed Appointments •Directly Observed Therapy

HIV ADHERENCE NETWORK DEVELOPMENT

H.A.N.D. MENU ITEMS• Logistical Supports• One-on-one Treatment Education• Strategy group• Group Education Sessions• One-on-one Counseling Sessions• Buddy Program• Support groups• Enhanced Pharmacy Services• Intra-network referral• Directly Observed Therapy

Stages of Readiness

Awareness of Need and Willingness to

Deal with Need

• Medications to reduce viral load and disease progression

• Antibiotics to reduce the risks of opportunistic infection

• Behavioral Risk Reduction

Stages of Engagementof 114 Active Clients

• 9 New

• 47 Not on HIV meds or prophylaxis

• 28 On Prophylaxis

• 6 On HAART

• 17 On HAART and Prophylaxis

• 41 in HAND

Engagement Requires Multiple Visits, Reminders, Incentives and Reaching Out to

Clients

• Through sustained “outreach” to the SROs by various members of the staff, a safety net is built which can quickly identify crisis and change in status as well as engagement, for those who are ready to receive medical care, drug treatment and other intensive treatment and ready to manage living with HIV.

Reducing Degrees of Separation Between Clients, Providers and Systems

of Care• Front Line Workers

• Medical and Mental Health Practitioners

• Linkages between Prevention and Care

• Case Conferencing/Continuous Quality Improvement

• Linkages to Community Based Organizations

• Linkages to Primary and Specialty Care

• Linkages to Social Services

A Harm Reduction Approach to Adherence

• Clients may be ready – to open the door but not let anyone in

– for nutritional support but not ready for a flu shot

– to have their bloods drawn in their room, but not ready to go for a comprehensive medical exam

– to go to the dentist, but not ready to go the ID clinic

– for detox but not ready for prophylaxis

– to take AZT to reduce the risk of perinatal transmission of HIV to their child, but not ready to be put on a regimen to treat their own disease

PROGRAM APPROACH The program incorporates behavioral change and

harm reduction theory and practice to reach individuals “where they’re at”:

• geographically, emotionally, spiritually, psychologically, financially and physically

• while assessing each person’s readiness for risk reduction, engagement in care and engagement in wellness and disease management

• while considering the individual’s stage of HIV disease progression, mental health status and other co-morbidities

For more HIV-related resources, please visit www.hivguidelines.org