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Retention in HIV
Medical Care
or
The Gorilla
by
Thomas P. Giordano, MD, MPH
Baylor College of Medicine
DeBakey VA Medical Center
Thomas Street Health Center
Houston, TX
Objectives
• Review the importance of retention in HIV
care
• Learn approaches to measuring retention in
care suitable for routine HIV care
• Learn approaches to improving retention in
care suitable for routine HIV care
• Review studies underway focused on
retention in HIV care
Cases
• Mr. W: 28 year-old Black man
– Diagnosed with HIV in late 1998
– CNS toxoplasmosis, wasting, dementia, CMV
esophagitis
– CD4 cell count = 6
• Mr. T: 26 year-old Black man
– Diagnosed with HIV while in Ben Taub in 1999
– Pulmonary tuberculosis
– CD4 cell count = 265
Which patient is still alive today?
Rembrandt, The Raising of
Lazarus, c. 1630
Audience Response: What proportion of return
patients to your clinic fail to attend their
scheduled visit (“no show”)?
1.
2.
3.
4.
5.
6.
0-10%
11-20%
21-30%
31-40%
41-50%
> 50%
Prevalence and impact of
poor retention in care
The HIV Treatment Cascade
The HIV Treatment Cascade
80%
77%
66%
89%
77%
The HIV Treatment Cascade
72%
28%
Of the 849,875 Non-suppressed:
Slide courtesy of Rivet Amico
Retention in care and mortality
(n=2619)
Giordano, CID 2007, 44:1493
Retention in Care and Mortality
(n=2619)
Characteristic
Visit in 4 quarters
Visit in 3 quarters
Visit in 2 quarters
Visit in 1 quarter
AHR
referent
1.41
1.68
1.94
95% CI
P value
1.10-1.82
1.24-2.26
1.36-2.76
<0.01
<0.001
<0.001
Adjusted for age, race/ethnicity, baseline CD4 cell count, HAART use,
hepatitis C virus coinfection, non-HIV-related comorbidity score,
alcohol abuse, hard drug use, and social instability.
Giordano, CID 2007, 44:1493
Missed Visits and Mortality
Characteristic
HR (95%CI)a
Missed visit in 1st year
Age (HR per 10 years)
CD4 count <200 cells/mm3
Log10 plasma HIV RNA
2.90 (1.28- 6.56)
1.58 (1.12-2.22)
2.70 (1.00-7.30)
1.02 (0.75-1.39)
ART started in 1st year
0.64 (0.25-1.62)
a
Cox proportional hazards (PH) analysis also adjusts for sex,
insurance, race/ethnicity, depression, anxiety, alcohol abuse, and
substance abuse.
Mugavero et al. Clin Infect Dis 2009;48:248-56
Retention in Care
Measuring Retention in Care
Measure
Need
missed
visit
data?
Ease of
calculating
Follow-up Potential for
time
misinterpretation*
needed
Proximity to
“retention in
care”
Missed visit
Yes
Easy
>6 m
High: if no scheduled visits, will be
falsely low; if automatic
rescheduling, will be falsely high
Patient:
moderate;
Clinic: distant
Appointment
adherence
Yes
Moderate
Pt: >1 yr
Clinic: 1 d
High: if no scheduled visits, will be
falsely high; if automatic
rescheduling, will be falsely low
Patient:
moderate;
Clinic: distant
No-show rate
Yes
Moderate
Pt: >1 yr
Clinic: 1 d
High: if no scheduled visits, will be
falsely high; if automatic
rescheduling, will be falsely low
Patient:
moderate;
Clinic: distant
Persistence:
3, 4 m intervals
No
Moderate
>6 m
Mod: will underestimate RIC for
patients not needing frequent visits
Close
Persistence:
6 m intervals
No
Moderate
>1 yr
Moderate: will overestimate RIC for
patients needing frequent visits
Moderate
Persistence:
HRSA/HAB
No
Moderateto-difficult
>1 yr
Moderate: will overestimate RIC for
patients needing frequent visits
Moderate
Low
Pt: Easy
>1 yr
Close
Clinic: Diff.
*All can be misinterpreted if patients unknowingly transferred care elsewhere, were incarcerated, or died.
Gaps
No
Giordano TP (2012) Measuring retention in HIV care. www.medscape.com.
Measure
Need
missed
visit
data?
Ease of
calculating
Follow-up Potential for
time
misinterpretation*
needed
Missed visit
Yes
Easy
>6 m
High: if no scheduled visits, will be
falsely low; if automatic
rescheduling, will be falsely high
Patient:
moderate;
Clinic: distant
Appointment
adherence
Yes
Moderate
Pt: >1 yr
Clinic: 1 d
High: if no scheduled visits, will be
falsely high; if automatic
rescheduling, will be falsely low
Patient:
moderate;
Clinic: distant
No-show rate
Yes
Moderate
Pt: >1 yr
Clinic: 1 d
High: if no scheduled visits, will be
falsely high; if automatic
rescheduling, will be falsely low
Patient:
moderate;
Clinic: distant
Persistence:
3, 4 m intervals
No
Moderate
>6 m
Mod: will underestimate RIC for
patients not needing frequent visits
Close
Persistence:
6 m intervals
No
Moderate
>1 yr
Moderate: will overestimate RIC for
patients needing frequent visits
Moderate
Persistence:
HRSA/HAB
No
Moderateto-difficult
>1 yr
Moderate: will overestimate RIC for
patients needing frequent visits
Moderate
Adherence
Proximity to
“retention in
care”
Low
Pt: Easy
>1 yr
Close
Clinic: Diff.
*All can be misinterpreted if patients unknowingly transferred care elsewhere, were incarcerated, or died.
Gaps
No
Giordano TP (2012) Measuring retention in HIV care. www.medscape.com.
Measure
Need
missed
visit
data?
Ease of
calculating
Follow-up Potential for
time
misinterpretation*
needed
Missed visit
Yes
Easy
>6 m
High: if no scheduled visits, will be
falsely low; if automatic
rescheduling, will be falsely high
Patient:
moderate;
Clinic: distant
Appointment
adherence
Yes
Moderate
Pt: >1 yr
Clinic: 1 d
High: if no scheduled visits, will be
falsely high; if automatic
rescheduling, will be falsely low
Patient:
moderate;
Clinic: distant
No-show rate
Yes
Moderate
Pt: >1 yr
Clinic: 1 d
High: if no scheduled visits, will be
falsely high; if automatic
rescheduling, will be falsely low
Patient:
moderate;
Clinic: distant
Persistence:
3, 4 m intervals
No
Moderate
>6 m
Mod: will underestimate RIC for
patients not needing frequent visits
Close
Persistence:
6 m intervals
No
Moderate
>1 yr
Moderate: will overestimate RIC for
patients needing frequent visits
Moderate
Persistence:
HRSA/HAB
No
Moderate: will overestimate RIC for
patients needing frequent visits
Moderate
Persistence or Constancy
Moderateto-difficult
>1 yr
Proximity to
“retention in
care”
Low
Pt: Easy
>1 yr
Close
Clinic: Diff.
*All can be misinterpreted if patients unknowingly transferred care elsewhere, were incarcerated, or died.
Gaps
No
Giordano TP (2012) Measuring retention in HIV care. www.medscape.com.
Audience Response: Epistemology is:
1.
2.
3.
4.
The study of letters
The study of how we know
The study of urine
“Damn it Giordano, I’m a doctor, not a
philosopher!”
Verrocchio, Florence
(Orsanmichele) 147683.
Verrocchio, Florence (Orsanmichele) 1476-83.
Why don’t people stay in HIV care?
• If untreated, HIV is fatal
• Good treatments are available
• Why would you not avail yourself of them?
Audience Response: If you heat water past a
certain point, you will see a substance rising
from the water. That substance is:
1. Smoke from the water burning
2. Water in the gaseous phase
Audience Response: If you heat wood past a
certain point, you will see a substance rising
from the wood. That substance is:
1. Smoke from the wood burning
2. Wood in the gaseous phase
Why don’t people stay in HIV care?
• If untreated, HIV is fatal
• Good treatments are available
• Why would you not avail yourself of them?
Why don’t people stay in HIV care?
• Disease severity
– Lower perceived need for care
– Fewer non-HIV comorbidities
• Psycho-social characteristics
– Substance use and mental health problems
– Low perceived benefits of care (trust, past experiences)
– Less social support
– Stigma, fear and denial
– Low literacy
• System factors
– Less ancillary services / greater unmet need (housing,
transportation)
– Confusing health care systems (transitions, multiple programs)
– No or inadequate insurance
– Cost (out-of-pocket, lost wages, opportunity)
Situated Information-Motivation-Behavioral Skills Model
Amico J Health Psych (2011) 1-11
Randomized, controlled trials of
interventions to improve retention in care
Intervention to Improve Linkage: ARTAS
Replicated in ARTAS II
100
80
Percent
273 participants, 4 cities
78% diagnosed <6 m
90 d of strength-based
case management
78
64
60
49
60
40
20
0
6 months
12 months
SOC Intervention
Gardner, AIDS 2005, 19:423; Gardner AIDS Pt Care STD 2007, 6:418
Preliminary Findings From CDC/HRSA
Retention in Care Project
CDC: Lytt Gardner, Gary Marks, Jason Craw
HRSA: Faye Malitz, Laura Cheever, Robert Mills
Mountain Plains AETC: Lucy Bradley-Springer, Marla Corwin
Baltimore: Richard Moore, Jeanne Keruly
Birmingham: Mike Mugavero, Mike Saag
Boston: Meg Sullivan, Mari-Lynn Drainoni
Houston: Tom Giordano, Jessica Davila
Miami: Allan Rodriguez, Lisa Metsch
New York City: Tracey Wilson, Susan Holman
Gardner, 7th International Conf on HIV Treatment and Adh, June 2012
Phase 2 Timeline of Intervention Activities
-Eligibility screen
-ACASI (all enrollees)
-Randomized
-Session 1 (EC, EC+)
Intro; HIV educ;
locator info.
Enrollment at
clinic
Reminder calls
at 7 & 2 days
before primary
care appt.
2-week
Interv.
visit
Session 2
(EC+ only;
97% received)
-Retention scrn
-Skill modules
Interim
phone call
Phone call to
patient who
missed appt.
Attend
primary
care visit
Interim
phone call
Miss primary
care appt
Brief F-to-F w/
interventionist
(EC, EC+)
EC :
Enhanced contact arm
EC+ : Enhanced contact + skills arm
Gardner, 7th International Conf on HIV Treatment and Adh, June 2012
Constancy Result
Outcome Arm
Percent
Success
Enhanced Contact
55.7
4-Month Standard of Care
Constancy
Enhanced Contact
+ Skills
Standard of Care
45.8
Prevalence pRatio
value*
1.22
0.0006
1.21
0.0008
55.5
45.8
* Log binomial
Gardner, 7th International Conf on HIV Treatment and Adh, June 2012
Attended All HIV Primary Care Appointments
Outcome
Arm
Adjusted*
Percent
Success
Enhanced Contact
Attended
All PC
Appts
31.0
Standard of Care
24.6
Enhanced Contact
+ Skills
31.6
Standard of Care
Prevalence p-value*
Ratio
1.26
0.0033
1.28
0.0015
24.6
* Log binomial, adjusted for # scheduled appointments
Gardner, 7th International Conf on HIV Treatment and Adh, June 2012
Appointment Adherence
Outcome
Arm
Enhanced
Contact
Standard of Care
Appt
Adherence
Enhanced
Contact + Skills
Standard of Care
Mean
Prevalence p-value
Proportion of Ratio
Kept Appts
.718
1.08
0.0002
1.06
0.008
.662
.702
.662
Gardner, 7th International Conf on HIV Treatment and Adh, June 2012
That is it.
Recommendations: Entry into/Retention in Care





Systematic monitoring of successful entry into HIV care
is recommended for all individuals diagnosed with HIV
(II A).
Systematic monitoring of retention in HIV care is
recommended for all patients (II A).
Brief, strengths-based case management for individuals
with a new HIV diagnosis is recommended (II B).
Intensive outreach for individuals not engaged in
medical care within 6 months of a new HIV diagnosis
may be considered (III C).
Use of peer or paraprofessional patient navigators may
be considered (III C).
Audience Response: In what proportion of
patient encounters do you discuss ART
medication adherence?
1.
2.
3.
4.
5.
0-20%
21-40%
41-60%
61-80%
81-100%
Audience Response: In what proportion of
patient encounters do you discuss the
importance of adherence to clinic visits?
1.
2.
3.
4.
5.
0-20%
21-40%
41-60%
61-80%
81-100%
Audience Response: Imagine you missed your last
dental cleaning and it has been a year. I’m your
dentist. I tell you, “You know, your really need to get
your teeth cleaned every 6 months. Bad things could
happen to your teeth if you don’t. They might even
fall out.” This statement from me makes you feel:
1.
2.
3.
4.
More knowledgeable
Guilty and imperfect
More motivated
Mad, like you are being treated like a child
Given Accurate Adherence Data, How Do
Physicians Talk To Their Patients?
Data to provider
included:
MEMS and SR
adherence;
reminder use;
reasons for
missed doses;
beliefs about
ART; alcohol and
drug use; and
depression
Two routine office
visits per subject
Wilson JAIDS 2010; 53:338
Given Accurate Adherence Data, How Do
Physicians Talk To Their Patients?
• Adherence
dialogue
increased
• Little
problem
solving
• Most was
“directive”
• Adherence
no different
Wilson JAIDS 2010; 53:338
SPNS Model for Opportunities to Improve
Adherence to Care
Persons in Care
Interventions to
Engage in Care
Pivotal Points
Opportunities
Interventions to
Prevent Falling out
of Care
Persons Unstable in
Care
Rajubian, AIDS Pt Care STD 2007, 21:S-20
3/22/20
17
Gardner, Clin Infect Dis. 2012 Oct;55(8):1124-34
Phase 1: Features of Clinic-Wide Intervention
• Theme: “Stay Connected for Your Health”
• Provider messages about importance of regular care and
keeping appointments
 Working as a team
 Keeping you healthy
 Best possible care
 Staying ahead of the virus
• Brochure
• Posters (waiting room, exam rooms)
Gardner, Clin Infect Dis. 2012 Oct;55(8):1124-34
Gardner, Clin Infect Dis. 2012 Oct;55(8):1124-34
Gardner, Clin Infect Dis. 2012 Oct;55(8):1124-34
Gardner, Clin Infect Dis. 2012 Oct;55(8):1124-34
Gardner, Clin Infect Dis. 2012 Oct;55(8):1124-34
Gardner, Clin Infect Dis. 2012 Oct;55(8):1124-34
Gardner, Clin Infect Dis. 2012 Oct;55(8):1124-34
Gardner, Clin Infect Dis. 2012 Oct;55(8):1124-34
SPNS Outreach Intervention
• Baseline engagement predicts subsequent
engagement, though not completely
• Factors associated with retention at 12 month
follow-up (adjusted for race and last CD4)
• Discontinued drug use, decreased structural
barriers, decreased unmet needs, and stable beliefs
about HIV
Rumptz, AIDS Pt Care STD 2007, 21:S-30
Patient Satisfaction
Dang B et al. PLoS ONE 2013: 8(1): e54729.
Program Innovations
• Public health approaches
–
–
–
–
Washington DC
King Co
LaPHIE
North Carolina
• Care delivery models
–
–
–
–
Medical home
Open access
TeleHealth
Consultant-Primary care balance
• in+Care Campaign
Domestic Intervention RCTs Underway
• CDC/HRSA RIC study final results
• Cunningham R01 (peer intervention in jail releasees)
• El Sadr R01 (navigator x contingency mgmt [CM] in substance
using MSM)
• Giordano R01 (peer mentoring in hospitalized out-of-care)
• HPTN 065 Study (CM for linkage in newly dx)
• Metsch and Del Rio “Hope” (CM in hospitalized substance users)
• Metsch R01 (substance use tx and navigation in crack users)
• Mugavero R01 (combination CDC and PACT in newly dx)
Recommendations for Now
1. Track no-show rates and out of care
2. Minimize unmet need: Strengthen access to
substance use, mental health, case management,
and social services
3. Streamline your clinic processes to reduce barriers
for persons attending clinic (bringing patients back
is much more difficult once out of care completely)
4. Improve the customer’s experience
Recommendations for Now
5. Work with ER and inpatient services, CBOs, public
health agencies, jails/prisons, other RW providers
to identify poorly retained in care and build or
strengthen re-linkage processes
6. Build or strengthen outreach or peer navigator
programs
7. Spread the word about the importance of
retention, have staff advocate with patients for
retention
8. Problem solve with your patients just as you would
for adherence to medications
Retention in Care: Tame the Gorilla
Acknowledgements
Patients
Institutions
Baylor College of Medicine
Thomas Street Health Center
Harris Health System
DeBakey VA Medical Center
M.D. Anderson Cancer Center
Funding/Support
NIH R34MH074360
HRSA H97HA03786
Contract 200-2007-23685 (CDC HRSA)
NIH R01MH085527
NIH U18HS016093
BCM/UTH CFAR
Colleagues
Rivet Amico, PhD
April Buscher, MD, MPH
Jeff Cully, PhD
Jessica Davila, PhD
Michael Kallen, PhD
Nancy Miertschin, MPH
Michael Mugavero, MD, MPH
William Slaughter
Melinda Stanley, PhD
Research Staff
Sallye Stapleton
Elizabeth Soriano
Christine Hartman
Hina Budhwani
Marisela Weaver
Leonardo da Vinci, Genevra de’ Benci, 1474