Retention challenges for a communitybased HIV primary care clinic and implications for intervention

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Retention challenges for a community-based HIV
primary care clinic and implications for
intervention

• A Supplemental Study to the Health System
  Navigation Demonstration Project
• Sharon Coleman, MS, MPH

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For more than thirty-five years, we have been
working to improve the physical and mental health
of our community, especially those who are
traditionally underserved like lesbian, gay,
bisexual and transgender (LGBT) people, women,
those living with HIV/AIDS, and people from
communities of color.
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In addition to our primary care role, Fenway is
internationally known for its work on HIV
prevention, treatment, and research. Our
alternative insemination program and our family
and parenting services for lesbians and gay men
have helped empower the first generation of
openly gay families.
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Topics of Discussion

• Background and Significance
• Study Aim and Purpose
• Research Method and Design
• Survey Results/Chart Review Results
• Clinical Application

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Background and Significance

• According to the HIV Cost Service Utilization
  Study just 36 to 63 percent of adults with HIV
  infection see a provider at least every 6 mos.
  The most affected populations are traditionally
  underserved and hard to reach groups.
• Each year at Fenway Community Health,
  approximately 125 HIV-infected patients
  discontinue care for unknown reasons.

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Study Aim and Purpose

• Identify a population of HIV-infected individuals
  who had been receiving medical care at Fenway
  Community Health and have been lost to follow up.
• Individuals were identified as lost to follow up
  (LTF) if they had not received medical care for 1
  year or greater.
• The dataset covers 4 years patients that were
  LTF in 2001, 2002, 2003, or 2004.
• Are there factors that are under our control to
  impact LTF? Can we get some patients back into
  care via Health System Navigation?

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Health System Navigation

• Health System Navigation (HSN) is an innovative
  access to care model. It combines elements of
  community outreach worker and patient advocate
  models, complementing case management in specific
  ways. We envision the approach as being the
  foundation for a network of services along an HIV
  continuum of care.

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Research Method and Design

• 495 patients were identified as lost to follow
  up.
• A survey instrument was administered by telephone
  and by mail. The Health System Navigation
  prescreener was embedded in the survey instrument
  to identify clients eligible for HSN.
• Survey instrument identified specific reasons for
  discontinuing care.
• Chart review Separate analysis of LTF Cohort vs.
  Active Population to determine predictors.

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Survey Results

• We completed 179 surveys. The CASRO calculated
  response rate 51 .
• 14 were deceased, 15 were incarcerated or were
  not able to be located.
• 22 reported sporadic care elsewhere and 8
  reported no regular HIV provider.
• 14 still residing in Boston were eligible for
  HSN.
• Some reported personal-cultural, structural, and
  financial barriers to care at FCH.

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Contributed to Leaving FCHclient could choose
more than one response N179
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Emerging themes from respondents that cited
dissatisfaction with primary provider

• Respect and Support of Provider
• Shared Health Care Decision Making
• Management of Patient Concerns
• Access to Provider

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Respondent quotes

• Often saw a PA or RN vs. my PCP
• Felt pressure to go on a drug regimen, was
  frustrated with paternalistic attitude
• Felt rushed through appointments
• Felt like provider had no empathy
• Loved my provider he included me in his
  decisions
• Received excellent care, my provider was
  comfortable with gay issues
• I was treated with respect and dignity

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What do you like about your care now?
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Retrospective analysis of chart data

• A cohort of 896 HIV-infected patients who were
  actively receiving care in CY 2000.
• Care use was followed until 1/1/2005.
• Predictors of LTF were determined using Cox
  proportional hazards regression modeling.

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Factors Predicting LTF in the HIV-infected Cohort

• Predictor variables of interest that we
  considered
• Severity of disease
• Substance abuse history
• Race-ethnicity
• Gender
• Insurance status
• History of incarceration
• Use of case management
• Number of no shows or missed appointments

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Results from Regression Analysis
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HIV Markers of active patients vs. tenuously
connected patients
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Clinical Application

• Perform a screening assessment to determine if a
  patient is at risk of dropping out of care.
• Refer high risk patients to medical social work
  and/or Health System Navigation.

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How has the organization responded?

• Boston Public Health Commission Grant awarded
  which will incorporate prevention navigation and
  HSN to priority populations in Boston (MSM, MSM
  of color, MTF Transgender).
• There has been a request for funding to provide
  an HIV community navigator which will include
  case finding and engagement/retention activities.

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How has the organization responded? (contd)

• Regular patient satisfaction questionnaires.
• Medical department continuing education
  presentations including cultural competence.
• When calling for an appointment, patients are
  informed of provider availability and
  credentials.
• Specific provider issues are discussed
  anonymously with providers in supervision
  meetings.

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Can HSN improve provider engagement?

• Quotes of engaged patients (2 examples)
• INT1 What do you think you can get out of being
  involved in this program? The Health System
  Navigation program?
• Maggie Its been helpful. It helped me with my
  aftercare and with my HIV status and all that. It
  helped me with the Fenway clinic and with
  Housing. He helped me a lot, legal matters . I'm
  grateful for that.
• INT1 He helped you get a new doctor?
• Maggie A doctor, a social worker, a psych
  doctor, also an HIV ? I feel like that's about
  all
• INT2 So tell me about what you are doing about
  your HIV now? Do you feel like you are getting
  care on a more regular basis?
• Dave Yeah, since I have been coming to Fenway.
  They refer me to see a therapist, social worker,
  and cause also I need to see somebody because I
  was really verbally, sexually, and physically
  abused so far, until I was age 16. So, to help me
  see a therapist, somebody I can talk to and
  stuff. Other things too, like a social worker or
  somebody else that can help me with housing.

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Learning objectives revisited

• Identify factors that may predict HIV patient
  attrition.
• Describe a replicable model for risk assessment
  when patients are at high risk of dropping out of
  care.
• Understand the importance of a peer or near peer
  based Health System Navigation intervention.