Transcript Reflections on Retention or The World of Connectivity in

Reflections on Retention or
The World of Connectivity in HIV
Ambulatory Care
Bruce D. Agins, MD MPH
Medical Director, NYSDOH AIDS Institute
Overview of the Talk
• Defining Retention
• Rationale for Focusing on Retention
• Measurement
• QI Strategies
• The Next Frontier: Revisiting Taxonomy
Defining Retention
• The act of keeping or holding in one’s
possession
• To keep in a particular place,
condition or position
Why is Retention Important?
• Medical care:
– The heart of the patient-doctor
relationship:
• The patient identifies the doctor (clinic) as his
or her provider
• The doctor identifies the individual as his or
her 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?
• Revenue
– If patient’s keep coming to clinic, more
bills can be generated in the fee-forservice system.
Why is Retention Important?
• Healthcare Costs
– If patients are retained in care, they are
more likely to receive preventive care, use
emergency services less and keep overall
healthcare costs lower.
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
– Sources of data
– Unmet need
• But, why??
No-Show Rates: aka “DNKA”
• No-show rates range from 25% to >40% in
published studies
• Limitations:
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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 and open access?
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 past 4 months
# 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)
# pts with 2+ visits during the defined 12-month period
# pts in the clinic registry during the defined period
# pts with no visit during the past 4 months
# pts with at least 1 visit during past 12 mos
Current NYS Retention Measure
• Number of unique clients with at least
2 or more visits during the past 12
months, one in each 6-month period
Number of unique clients with at least
1 visit during the past 12 months
Data Sources
• In the Clinic
– Administrative databases in clinic
– Medical record review required to ascertain
reasons for not keeping appointments – may
include case management notes
Unmet Need
• During a 12-month interval, the
number of patients who have had
either a viral load or CD4 count
measured or who have been
prescribed antiretroviral therapy
Why Don’t Patients Come?
• Which patients are more likely to miss their
appointments*:
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Patients from minority communities, especially African-Americans
Younger age
Heterosexual
Education level lower than high school
Lack of health insurance
Lower income
Higher CD4 count
No AIDS diagnosis
History of IDU or current IDU
Lower perceived social support
Shorter follow-up since baseline
Less engagement with health care provider
*Numerous studies; bibliography available upon request
Why Don’t Patients Come?
• HIV Literature:
– Norris abstract 1990: conflict with work, no child care, no
transportation, family illness
– Palacio J Acquir Immune Defic Syndr 1999: among women:
forgetting, conflicts, too sick.
• Non-HIV Literature:
– Multiple sources: forgetting, feeling too ill, symptom
resolution.
– Lacy, Ann Fam Med 2004: negative emotions about seeing
doctor; perceived disrespect of beliefs and time; distrust;
lack of understanding about the scheduling system.
• Patient Satisfaction Surveys
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:
–
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–
–
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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
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*
Hospital Admissions per
year
(mean)
2.2 days
3.2 days*
ED visits per year (mean)
3.2
6.8*
Clinical Outcomes
Change in CD4 from
Baseline
Health Resource Utilization
*All comparisons are significant with p <0.01
Johns Hopkins AIDS Service Data Base 1999-2004
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 rescheduling 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
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
Focused Case Management Strategies:
Internal (facility) and External (community)
• Assess new patients for adherence barriers and make early,
proactive referrals to services
• Community liaison workers utilized to re-engage patients lost
to care
Improvement Processes
• “One of the best strategies leading to
success has been strong clinical and
administrative leadership in the
retention initiative.”
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
Setting Policy
• When can we stop making calls?
• How much effort should we make to
physically locate patients, especially when
contact information is incorrect?
• What are the legal responsibilities involved?
• Should certain patients be sought more
aggressively than others?
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?
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.
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)
In and
Out of
HIV
Care or
Infreque
nt User
Fully
Engaged
in HIV
Primary
Medical
Care
A New Taxonomy
• Retention
• Engagement?
-the act of
obtaining and holding
the attention of;
engrossing
-the act of pleasing
or attracting; winning
-the act of
entangling, involving
A New Taxonomy
• Connection
– the act of joining;
union
– an association,
alliance, or relation
– anything that joins,
relates, or connects;
a bond; a link
Connecting to Care:
17
Strategies
•
Adherence and self-management
•
Heartline hotline
•
Inter-agency networking
•
Aftercare plan
•
Support retreat: peer to peer
•
Support groups
•
Early intervention nurse
•
Woman to woman support
education
•
Teen peer outreach: peer
education
•
Primary care liaison
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Financial advocacy
•
Zip code mapping: targeting
•
Clinicians reaching out
activities
•
Intake housing coordinator-
•
Snapshot viral load testing
•
Deployed case management
–
•
Linkage to care
HIV care coordinator
Continuity of Care
• The state or quality of being unceasing, extending
or prolonged without interruption
[American Heritage Dictionary]
• An uninterrupted succession, unbroken course
• The extent to which services are coordinated an
uninterrupted succession of events concordant with
the patient’s clinical requirements. [Roos 1980; Shortell 1975]
• Both the provider and patient expect an enduring
relationship. [Carmichael 1976]
Continuity of Care
• “Continuity of care may be provided by
the same provider, the same care team
or practitioners within the same
group, or providers linked by referral.”
» Adapted from Hidalgo: “Measuring Continuity of Care in HIV
Special Needs Plans”. NYSDOH AIDS Institute. 1998.
Current Retention Activities
• In New York State
 Focus of improvement projects for several Quality
Learning Networks, including HHC and substance
use providers
 NYS Quality of Care Advisory Committee retention
workgroup - addressing retention statewide
 Internal AIDS Institute Continuity of Care
workgroup
 Ongoing review of journals and other publications
Acknowledgments
• Elizabeth Horstmann
• The HHC HIV Quality Learning Network