Transcript Reflections on Retention or The World of Connectivity in

Reflections on Retention:
Connecting to Care
Bruce D. Agins, MD MPH
Medical Director,
New York State Department of Health AIDS Institute
East Bay HIV Update
Oakland
June 12, 2009
Overview of the Talk
• Defining retention
• Rationale for focusing on retention
• Reviewing the literature
• Measurement
• Evidence base for strategies
• Quality improvement and retention
• Strategies and Conclusions
Continuum
Engagement in Care
Not in
Care
Unaware of
HIV Status
(not tested
or never
received
results)
Fully
Engaged
Know HIV
Status
(not
referred
to care;
didn’t
keep
referral)
May Be
Receiving
Other
Medical
Care But
Not HIV
Care
Entered HIV
Primary
Medical
Care But
Dropped
Out
(lost to
follow-up)
Non-engager
In and
Out of
HIV Care
or
Fully
Engaged
in HIV
Primary
Infrequent Medical
User
Care
Sporadic
User
Fully
Engaged
Health Resources Service Administration (HRSA)
3
Why is Retention Important?
• Health care:
– The heart of the patient-provider
relationship:
• The patient identifies the provider team
(clinic) as his or her provider
• The team identifies the individual as their
patient
Why is Retention Important?
• The Primary Care Model
–
–
–
–
–
Access
Coordination
Continuity
Comprehensiveness
Quality
• Perfectly suited to system-level
interventions and quality improvement
Why is Retention Important?
• Healthcare Cost
– If patients are retained in care, they are
more likely to receive preventive care, use
emergency services less and keep overall
healthcare utilization and costs lower,
placing less demand on human and
material resources.
Why is Retention Important?
• Public Health
– Keeping patients retained in healthcare
achieves the overall goal of keeping the
population healthy, increasing the
likelihood of preventing chronic disease
and reducing morbidity and premature
mortality.
Why is Retention Important for
People Living with HIV?
• Hypothesis:
– Retention in care promotes improved
adherence to treatment which results in
lower viral loads, prevention of drugresistance and improved health
outcomes.
• Is there evidence to support the
hypothesis?
Why is Retention Important for
People Living with HIV?
• The Evidence Base:
– Rastegar, AIDS Care 2003: Missed appointments associated
with detectable viral load. Chart review 1997-99.
– Lucas, Ann Intern Med 1999: Missed appointments
associated with failure of suppression. JHU. 1996-8.
– Valdez, Arch Intern Med 1999: Missing <2 appts per year
associated with virologic success defined as <400 copies.
– Sethi, Clin Infect Dis 2003: Missed appointments associated
with viral rebound and clinically significant resistance at JHU
2000-1.
– Nemes, AIDS 2004: Missing 2 appointments associated with
decreased adherence among >1900 patients in Brasil.
Why is Retention Important for
People Living with HIV?
• The Evidence Base:
– We still don’t know
which comes first:
• Viral load elevation or
• The missed
appointment
Measurement
• What is the extent of the problem?
– No-shows
– Retention rates
• But, why??
No-Show Rates: aka “DNKA”
• No-show rates range from 25% to >40% in
published studies
• Limitations:
–
–
–
–
–
Patients may be counted for multiple visits
Type of clinic visit not uniform
Time frame accepted for prior cancellation
Rescheduling: does it count?
What about walk-ins?
Retention Rates
• Require precise definitions of expected
number of visits during a specified time
interval
• Eligible population required for the
denominator which requires determination
of visit type and determination of active
caseload of the clinic
Retention Rates
• Examples:
# of unique clients with at least 1 visit in each half of the year
# of unique clients with at least one visit in past 12 months
# pts with at least 1 visit during 3 month interval after 12 month
period
# pts with 3 or more visits in the 12 mo. period (*1 in last 6
months)
Reviewing the Literature
Who misses appointments?
• Clinical
– Higher CD4 count (Catz, 1999; McClure, 1999; Arici,
2002)
– Not having an AIDS diagnosis (Israelski, 2001; Arici,
2002)
– Detectable viral load and AIDS-defining CD4 count (Berg,
2005)
• Other
– History of or current IDU (McClure, 1999; Arici, 2002;
Kissinger, 1995; Lucas, 1999)
– Lower perceived social support (Catz, 1999)
– Less engagement with health care provider (Bakken,
2000)
– Shorter follow-up since baseline (Arici, 2002)
Why do HIV patients not
come?
• Patients at a community based clinic: conflicts with
work schedules, lack of child care, no transportation,
family illness and hospitalization (Norris, 1990)
• Women patients: forgetting the appointment, having
a conflicting appointment and feeling too sick to
attend the visit (Palacio, 1999)
• NYC clinic: no specific explanation, forgot, meant to
cancel, unexpected social reasons (Quinones, 2004)
Why do patients not come?
• Not HIV disease-specific studies
– Forgetting the appointment
– Feeling too ill to attend
– Resolution of symptoms
• (Cashman, 2004; Moore, 2001; Waller, 2000; Barron, 1980)
– Negative emotions about seeing doctor; perceived
disrespect of beliefs and time; distrust; lack of
understanding about the scheduling system.
• (Lacy, Ann Fam Med 2004)
Why Don’t Patients Come?
• One-Visit Study –
Queens Hospital Center*
– Exclude those who moved, transferred or died
– 15 patients not “retained”:
• Unable to contact 7
• Contacted 8:
–
–
–
–
–
2 reported active substance abuse, 1 returned to care
1 fear of recognition, referred to other HIV clinic
1 psychiatric history, attends multiple HIV clinics
1 looking for a job, returned to care
1 refused outpatient treatment despite extensive outreach
efforts (frequent QHC hospitalizations)
– 2 feeling well, are early in HIV and refused frequent medical
visits
Jazila Mantis, MD, Jean Fleischman, MD, Kathleen Aratoon, NP, Maria Szczupak,
RPh, Diana Jefferson, RN, Terri Davis, MSW, Maria Bucellato
Why is Retention Important for
People Living with HIV?
Population
Appointments
Health Outcome
123 patients, primary
care clinic, Baltimore
(Rastegar, 2003)
Not specified which
appts. included
Missed appts. associated
with VL> 500 copies/mL
273 patients, large urban Nursing, psychiatry,
clinic in Baltimore
dermatology, neurology
and gastroenterology
(Lucas, 1999)
Missed appts. associated
with failure to suppress
VL
195 patients, JHU
outpatients center
(Sethi, 2003)
Missed appts. associated
with viral rebound and
clinically significant
resistance
“Scheduled clinic visit”
366 patients, HIV clinic “Clinic visit”
in Cleveland
(Valdez, 1999)
Missing <2 appts.
associated lower VL
(<400 copies/mL)
Clinical Outcomes and Health Resource Utilization
Stratified by Percentage of Missed Visits
Percentage of Visits that were Missed because the
Client failed to keep scheduled appointment with
provider or social worker
(N=1500)
< 25%
> 25%
Using HAART
78%
64%*
Viral Load suppressed
(< 400 copies/ml)
65%
31%*
+68 cells/mm3
-36 cells/mm3*
2.2 days
3.2 days*
3.2
6.8*
Clinical Outcomes
Change in CD4 from Baseline
Health Resource Utilization
Hospital Admissions per year
(mean)
ED visits per year (mean)
*All comparisons are significant with p <0.01
Johns Hopkins AIDS Service Data Base 1999-2004
Visits and Outcomes:
Dose Response Relationship
•
GIORDANO, ET AL 2007 Multicenter VA Cohort Study CID 44: 1493-99
All Patients
CD4 Count*
+92
Viral Load**
-1.29
4 quarters
+100
-1.47
3 quarters
+72
-0.9
2 quarters
+20
-0.46
1 quarter
+48.5
-0.22
*median cells/106 p<.001
**median log10 copies/mL p<.001
Missed Visits and Mortality
Mugavero, et. al. 2009 UAB. CID 48:248-56.
• 543 new patients followed who were alive 12 months after
their first visit
• Visits during first 12 months of care analyzed from 1/00-1205
• 325 pts (60%) missed visit in first year
• 32/325 died whereas 10/218 died among those who did not
miss a visit [mortality rate 2.3/100 person-years vs. 1.0 per
100 person-years; p=.02]
• No difference in mortality based on whether 1 or >1 visit
missed
• Predictors of missed visits: younger/female/black/risk other
than MSM/public insurance/substance use disorders
Why is Retention Important?
• Patient Care and Public Health
– Retention has now been proven to
correlate with improved biological
outcomes that improve quality of life for
patients and reduce the likelihood of
further transmission of HIV to others
HIV Transmission Risk Behaviors
and Engagement in Care
Metsch, et. al. ARTAS Study. CID 2008; 47: 577-84.
• 316 patients followed from 4 US cities in secondary analysis of
ARTAS brief case management intervention study targeting patients
newly enrolled in care
• Used ACASI to assess presence or absence of self-reported
unprotected vaginal or anal intercourse with HIV-negative partner
• Analytic variable of visits was minimum of 3 visits in previous 6
months based on mean number of OPD visits in US (6)
• 80% follow-up rate at 6 and 12 months
HIV Transmission Risk Behaviors
and Engagement in Care
Metsch, et. al. ARTAS Study. CID 2008; 47: 577-84.
• Multivariate regression shows significant reduction in risky sexual
behavior among those with >3 visits compared with those who had
<3 visits
– Reduction from 27% at baseline to 12% at 6 mos; 14% at 12 months
• Other predictors: age>30; use of crack cocaine; female sex;
depression; residence in Miami
• Consideration: New patients involved who may have more frequent
visits; safe sex fatigue not a factor
Evidence Base for Strategies
to Connect Patients to Care
ARTAS Study:
Linking to Care
Gardner LI, Metsch LR, Anderson-Mahoney P, et al. Efficacy of a brief case management
interervention to link recently diagnosed HIV-infected persons to care. AIDS 2005: 19:423-31.
• Prospective randomized design of up to 5 brief
case management interventions in patients with
only one provider visit over 90 days; n=173
• More participants receiving had a a provider visit in
each of 2 consecutive 6 month periods compared
to controls (78% versus 60%)
• Across both groups, better care utilization
associated with no crack cocaine use, older age (40
years), receipt of supportive services and a more
recent diagnosis
Outreach Initiative:
HRSA SPNS Multi-site Evaluation
• Goals:
– To engage people in HIV care
– Turn sporadic users of care into regular users
– Promote retention in care
• Program models
– Scripted behavioral interventions, accompanying clients to
appointments, home-based services, health literacy & life
skills training
• Evaluation
– Quantitative and qualitative methodologies
– Link to outcomes
Outreach Initiative: Major Findings
(Cabral, et. al. 2007; AIDS Patient Care & STDs)
• Increased frequency of contact results in fewer gaps in care
during first 12 months of follow-up
– 773 patients from 7 sites followed and interviewed
– Purposive sampling; prospective nonrandomized with single arm
– Contact by clinicians, peers, and paraprofessionals
– Contact may occur in office, out of office, not face-to-face
– Types of contacts:
• Appointment reminder/reschedule, Service coordination,
Relationship building, Provide concrete services (food, transport),
Counseling, Provide information about the program, provide HIV
education, Accompany client to appointment, Refer to or make
appointment for health care, other
• Patients with 9 contacts during first 3 months were about half as likely
to have a substantial gap
Outreach Initiative: Major Findings 2
Factors Associated with Engagement
Rumptz, et. al. 2007 AIDS Patient Care & STDs.
• 58% become fully engaged in care (2 visits in 6
months) at 12 month follow up interval
• Factors associated with engagement in care among
those with change compared to those without:
– Discontinuation of drug use (4x)
– Decreased structural/practical barriers to care* (3x)
– Decrease in unmet needs** (3x)
– Stable belief barriers (2.5x)
* Difficulty paying for care, getting appointment at a
convenient time, making an appointment because of no
telephone, getting someone to answer calls to make an
appointment, locating care, and finding providers who
speak the same language
** financial assistance, housing, benefits assistance,
transportation, mental health care, food, and substance abuse
treatment
Outreach Initiative Major Findings 3:
System Navigators
Bradford, et. al. 2007 AIDS Patient Care & STDs.
• Patient Navigators:
– Care coordination model helps patients to
• Make better use of available resources
• Develop effective communication with providers
• Navigate complexities of multidisciplinary treatment
– May accompany patients to appointments
– Teach patients to address barriers to care
– May be peers or paraprofessionals, other than
staff
Outreach Initiative Major Findings 4:
Provider Role
Malinson, et al. 2007 AIDS Patient Care & STDs.
• Qualitative methodology – Grounded theory
• Facilitative behaviors:
– Connecting: presence (sitting down), attentiveness
– Validating: able to trust and confide
– Partnering: collaborative planning
• “Emotional intelligence” of provider results in role as
facilitator or barrier
• Ability to communicate in language patient understands cited
as key factor
Outreach Initiative:
Qualitative Findings
Rajabiun 2007: AIDS Patient Care & STDs
• Determinants of sporadic use:
–
–
–
–
–
level of acceptance of being diagnosed with HIV
ability to cope with substance use, mental illness, and stigma
health care provider relationships
presence of external support systems
ability to overcome practical barriers to care
–
–
–
–
dispelling myths and improving knowledge about HIV
facilitating access to HIV care and treatment
providing support
reducing the barriers to care
–
conducting client-centered risk assessments to identify and reduce sources of
instability and improve the quality of provider relationships;
implementing strategies that promote healthy practices;
creating a network of support services in the community;
supporting adherence through frequent follow-ups for medication and appointment
keeping
• Outreach interventions helped connect participants to care by:
• Program interventions to interrupt this cyclical process and foster
sustained, regular HIV care:
–
–
–
Quality Improvement and Retention
Improving Retention
• QI is perfectly suited to improve
retention in the clinic
• Improvement strategies
– Clinic operation & information systems
– Consumer involvement to identify barriers &
solutions
– Increasing staff & patient awareness
– Focused case management (internal & external)
Clinic Operation and Information System
Strategies
Clinic Organization
• Ensure coverage for provider vacations and time-off to avoid canceling
or re-scheduling appointments
• Establish patient database to track adherence with appointments
Pre-Appointment
• Reminder cards with date/time/location of visit mailed to patients
• Reminder calls made 48 hrs prior to appointment to allow patient time
to make arrangements, if needed
• Reminder calls to patients made by providers, case managers or other
staff closely involved w/ patient's care
• Schedule labs to be done prior to visits to maximize time spent w/
provider
Clinic Operation and Information System
Strategies
After a Missed Appointment
• Follow-up calls no later than 24 hours after missed appointment
During Clinic Visit
• Update patient contact information at EACH clinic visit
• Cross reference all sources of patient contact information to
consolidate and update
• Schedule labs for the next visit
• Improve visit/cycle time
Consumer Involvement
• Convene focus group of established patients to provide
feedback on retaining new patients
• Survey patients who have missed appointments to identify
common reasons and barriers
• Routinely share results of patient satisfaction surveys w/
Consumer Advisory groups to elicit feedback
• Survey new patients immediately following initial visit for
satisfaction w/ services
• Develop patient satisfaction surveys targeted to patient
groups w/ different levels of experience - patients w/ less
than 3 visits, patients w/ more than three clinic visits, etc.
Increasing Patient and Staff
Awareness
• Conduct new patient orientation sessions and
include discussion of staying in care
• Schedule one-to-one sessions for new patients
unable to attend group orientations
• Develop written patient materials on the
importance of staying in care
• Staff education - routinely discuss patient retention
w/ all staff
Focused Case Management Strategies:
Internal (facility) and External (community)
• Create “patient profile” sheet to summarize patient’s
appointment history
• Medical records of patients who missed appointments given
to providers at end of session-provider determines priority
for follow-up
• Multidisciplinary case conferencing includes plans for
retaining individual patients in care
• Develop categories of patients requiring more intensive
follow-up and develop specific protocols for each group
• Refer patients w/ two consecutive broken appointments to
case manager
Improvements: Current Status
• Patient Factors
– May or may not be amenable to change
– Supportive services may be beneficial
– Outreach programs effective but
expensive
• System Factors
– Amenable to change
– Do changes result in improvement?
– QI methods well-suited to improving
retention and testing strategies
The Role of the Clinic:
Information Systems
• Can you capture all HIV patients in the
facility?
• Can you track the right visits?
• Can you flag patients who don’t return?
• Do you know who is at risk for falling out of
care in your population?
The Role of the Clinic:
Consumer Involvement
• What reasons do your patients give for not
coming to clinic?
• Why do they want to come to clinic?
• Do you have a community advisory board?
Is it involved in designing your retention
work? Reviewing the data?
• Do your patients understand why it is
important to come for the visit?
The Role of the Clinic:
Case Management
• What systems do you have for addressing
retention in your clinic?
• Are the staff involved?
• Are unretained patients flagged for team
discussions?
• Do you need a reminder system?
• Do you have updated contact information
for your patients?
The Role of the Clinic:
Case Management (2)
• Do staff try to locate patients who
don’t come?
• Can you work with external agencies
to locate patients?
Looking Beyond the Clinic
• Patients may seek care from multiple
providers in different locations.
• Is a patient who receives care from another
provider “retained”?
• How should we define quality of care in the
context of retention when a patient receives
care outside of the clinic?
The Role of Government
• Measuring retention in the community
• Comparing rates
• Determining reliable data sources
• Identifying best practices - based on what
can be proven to work
• Supporting programs to re-engage patients
and return them to care
• Developing a data system to locate patients
Moving Forward
General Concepts
• Data sources are usually imperfect:
Improving them is a top priority
• Retention rates range from 70-85% in HIV
clinics: Who is not retained?
• Limited data about “at-risk” patients
Practical Strategies
• Partnerships with community-based
agencies offer great potential
• Supportive services, including navigation and
case management, help increase retention by
removing barriers and meeting needs
• Provider engagement and behavior affects
levels of and retention and decrease
sporadic use: fortify relationships
Practical Strategies (2)
• Use peers
• Target new patients
• Help patients access needed services to
remove barriers to care: transportation,
mental health support, drug treatment
• Reduce drug use
• Dispel negative health beliefs
What can we do now?
• Use a common measure
• Identify proven strategies: Measure!
• Focus efforts on those not fully engaged or
not retained
• Learn from patients
• Learn from each other
What can we do now?
• Link retention data to health outcomes
• Work with community partners to address
patient needs
• Develop networks and data systems to
locate patients and identify effective local
program models
Act Locally
• Retention activities and improvements are
unique to the context of each organization
and its patient population and its
community
A New Taxonomy
• Connection
– the act of joining;
union
– an association,
alliance, or relation
– anything that joins,
relates, or connects;
a bond; a link
Conclusions
• Retention in care is associated with improved
health outcomes
• Practical strategies can improve retention rates
involving healthcare providers and NGOs
• Addressing patient needs and barriers to care
improves retention
• Measurement is key to investigating the problem
and identifying effective solutions
• Some improvement will occur through clinic-based
improvements but long-term results will likely
require community-level action and coordination
Acknowledgments
• Johanna Buck
• Elizabeth Horstmann
• Fareesa Islam
• Jillian Brown
• The HHC HIV QI Learning Network