Transcript Grady Powerpoint Template (2010)

Campaign Webinar
Adolescent Transitions to
Adult HIV Care
February 10, 2015
1
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 Slides and other resources are available on our
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2
Agenda
1. Welcome & Introductions, 5min
2. Grady Infectious Disease Program:
Clinician-Led, 25min
3. Washington University of St. Louis:
Medical Case Manager-Led, 25min
4. Question & Answer, 10min
5. Campaign Updates, 5min
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In the chat room,
Enter your:
1. name,
2. agency,
3. city/state, and
4. professional
role at agency
Transitioning HIV-Infected Adolescents from
Pediatric to Adult Care
February 18, 2015
Ashley Boylan MPH, PA-C
Grady Infectious Disease Program
Ponce Center Family and Youth Clinic
Atlanta, GA
[email protected]
Faculty Disclosure Information
In the past 12 months, I have no relevant financial relationships with the
manufacturer(s) of any commercial product(s) and/or provider(s) of commercial
services discussed in this CME activity.
Every hour, 2 Americans aged
13 to 24 are infected with HIV
1.White House Office of National AIDS Policy. Youth and HIV/AIDS 2000: A New American Agenda.
Washington, DC: The Office, 2002.
Ponce Family and Youth Clinic
•
Grady Infectious Disease Program under Grady Health
Systems in Atlanta, GA.
–
Clinic federally funded by Ryan White Parts A,B & D (55%)
AIDs State Grant (7.8%) and Medicaid/Medicare (36.7%)
–
Largest publicly funded HIV clinic in nation
•
Medical Home Model.
•
Services need of >5600 patients with HIV/AIDS in Atlanta
–
71% with advance stage AIDs
•
CY 2014: Grady IDP Pediatric/Adolescent Program served
376 youth ages 13-24.
•
Enrolled 76 newly infected youth in 2014
•
Transition to Adult care by age 25
Number of Patients within Pediatric and Adolescent
Department
350
315
300
250
200
161
150
100
61
34
50
0
0-2
3-9
10-15
Age Range
16-24
Profile of many newly diagnosed youth
(13-24 years) at PFYC
• Homeless and hungry
• Unemployed with no prospects
• Constantly stigmatized and exposed to violence
• Mental health diagnoses including self-loathing and denial
• Further risk behavior and secondary HIV transmission
• Poor insight into HIV. Difficult to engage in care
• CD4’s in single or double digits
• Recurring STI’s and OI’s
• ~20% entering care with NNRTI resistance
Challenges Transitioning Medically Ill
Youth to Adult Care
•
Identifying adult providers versed in transitional care
•
Separation difficulties in youth providers
•
Youth’s resistance to change
•
Communication problems between youth and adult providers
•
Less time/resources for adolescents in adult practice settings
•
Lapses in insurance
•
Little knowledge of navigating adult healthcare delivery system
New York State Department of Health AIDS Institute and Division of Infectious Diseases, The Johns Hopkins University School of Medicine. (2011).Transitioning HIV-Infected Adolescents into Adult
Care: HIV Clinical Guidelines and Best Practices from New York State. New York State Department of Health AIDS Institute: New York.
Perinatal and Horizontal HIV Infection during
Adolescence
• 2 distinct populations that require
different approaches
– Horizontally-infected
– Perinatally-infected
HIV-Specific Challenges
•
Stigma
•
Increased need for mental health/case management
•
High rates of teen pregnancy
•
Lack of disclosure to support group
•
Multiple losses
•
Limited social support
•
Fear of seeing “sick” patients in adult clinic
•
Lack of providers in rural areas
HIV-Specific Challenges (cont.)
Perinatally
Infected
• Non-disclosure by guardian
• Loss of emotional support
• Barriers in achieving milestones
– Cognitive
– Developmental
• Complex clinical issues
• Anger
Non-Perinatally
Infected
• Non-disclosure to caregiver
• Non-disclosure to peer groups
• High rates of homelessness &
incarceration
• High risk sexual behavior
• Sexuality issues
New York State Department of Health AIDS Institute and Division of Infectious Diseases, The Johns Hopkins University School of Medicine. (2011).Transitioning HIV-Infected Adolescents into Adult Care:
HIV Clinical Guidelines and Best Practices from New York State. New York State Department of Health AIDS Institute: New York.
Perinatally-Infected Adolescents
•
91% of HIV perinatally-infected youth survived into adolescence and young adulthood
•
45% of the perinatally-infected adolescents in their cohort had been sexually active
•
43% of HIV positive youth report not using a condom in their last intercourse
•
25% admitted inconsistent condom use
•
Frequently engaged in high risk behaviors
•
40-60% continue to engage in unprotected sexual intercourse after learning their HIV status
•
24% become pregnant before their 19th birthday
Koenig, L.J., et. al, J Acquir Immune Defic Syndr, 2010. 55(3): p. 380-90
Leonard, A, Perspect Sex Reprod Health, 2010 June; 42(2): 110-116
Horizontally-Infected Adolescents
HIV Disease Course
• Adolescents are entering care with significant immune
dysfunction
– REACH study showed that median CD4 count in adolescents was 410 cells/ml
– 50% of women and 75% of males had counts less than 500 at study entry
– 27%-35% had AIDS
• Adolescents are more likely to have immune reconstitution
syndrome
• 16-20% are entering care with baseline resistance mainly to
NNRTIs
J. Adolesc Health 2001 Sep;29(3 Suppl):39-48.
Psychological Issues
• Adolescents are still concrete thinkers
– Difficulty understanding and believing the concept of disease
latency and asymptomatic infection
• Disclosure and partner notification
• Parental disclosure may be difficult
• Taking medication under a non-disclosure environment is also
challenging
• Provide help with partner notification
Transitioning to Adult Care
• Multiple challenges
– 1-stop shopping models are less likely in the adult population
– Programs and support mechanisms to improve adherence are
usually not available with adult providers.
– Gender identity and Sexual orientation: Transfer care to
practices who are lesbian/gay/bisexual/ transgender friendly
– Insurance issues
– Stigma and fear of discrimination
Few studies in transitioning HIV-infected
adolescents and young adults
Transitioning to Adult Care
5-phase approach
• Discussion with patient
• Meeting of Adult provider in the adolescent clinic
– Use of “Transition Physician” if possible
• Check-up with the adult provider in the adolescent clinic
• First appointment with the adult provider is accompanied by the
adolescent social worker
• 1 year of follow-up with the adolescent psychological team
New York State Department of Health AIDS Institute and Division of Infectious Diseases, The Johns Hopkins University School of Medicine. (2011).Transitioning HIV-Infected
Adolescents into Adult Care: HIV Clinical Guidelines and Best Practices from New York State. New York State Department of Health AIDS Institute: New York.
Example
Discuss
transition
Adult/Pediatric
Provider
meeting
Transition
decision
Assessment by
provider
Youth &
Adult/Pediatric
meeting
Patient & Adult
Provider Meet
Parent/Youth
Meeting
1st appointment
w/ adult
provider
Medical Team
Meeting
Facility Level Interventions
• Identify adult care providers
• Prepare medical summary
• Arrange meeting with patient, pediatric and adult providers
• Engage multidisciplinary team in transition
• Designate one person to oversee transition
New York State Department of Health AIDS Institute and Division of Infectious Diseases, The Johns Hopkins University School of Medicine. (2011).Transitioning HIV-Infected Adolescents
into Adult Care: HIV Clinical Guidelines and Best Practices from New York State. New York State Department of Health AIDS Institute: New York.
Knowledge Base Interventions
• Involve family/support system
• Ensure disclosure of serostatus
• Address individual barriers
• Teach youth to navigate adult healthcare system
• Ensure understanding of basic HIV biology
• Ensure understanding of HIV medications
• Develop life skills
• HIV prevention counseling
Relational Interventions
• Follow-up with transitioned patients by provider,
nursing or social work staff
• Invite “alumni” to programs, special events or
group meetings
Case 1 – Patient DT
• 24 y/o HIV+ MSM AA male
• HIV Diagnosis in 2004
• Enrolled into Grady IDP-PFYC at age 16
• Multiple sexual partners
• Recurrent STIs including:
– Syphilis x 2
– Multiple HPV anal condylomas
– Recurrent G/C infections
• ASCUS
Case 1 – DT
• Inconsistent compliancy to care
• HIV Resistant Testing showing a K103N mutation after
failing Tenofovir-Emtricitabine-Efavirenz
• Nadir 208 (9%)
• Psychiatric diagnosis include:
– Major Depressive Disorder
– Anxiety
– Personality disorder
Case 1-DT
HIV
Care
Case
Management
Mental
Health
Services
Primary
Care
Pediatric
Services for
DT
Peer
support
groups
Flexible
schedule &
appointment
times
Social
Work
Case 1-DT
Transition Process
for DT
Initiate transition conversation 2
yrs prior to 25th birthday.
Provider must encourage:
-Compliance and education
-Pt able to: Obtain refills
-Schedule own appts
-Reach and maintain undetectable levels
Refer and establish MH
care in Adult clinic 1 yr
prior
Identify new adult
provider 9 months prior
and have patient meet
new provider
Follow up appointment
with pediatric provider 3
months prior
Patient schedule appt
with new adult provider
6 months prior
Last medical visit with Pediatrics:
-Confirm pt has upcoming appt with new
provider
-Discuss any concerns pt has
- Ensure adequate refills until next MV
-Provide pt with appropriate clinic personnel
phone number
-Motivate to stay engaged
-Empower and educate
Case 1-DT
Problems
Solutions
DT encounters another older pt
in Men’s Clinic that he once had
exploitative sexual relations
with and believes man who
infected him
Work with patient in
indentifying new adult provider
in Women’s clinic that would
ensure privacy and safety
Severe anxiety and fear due to
encounter.
Pt unwilling to complete
transition process, attempts to
disappear to follow up
Worsening mental health status
due to fear, anxiety and stress
Unable to obtain new patient
appt for 4 months after last
pediatric Visit
Multiple follow up w/pediatric
psychologist & adult
psychiatrist to discuss new
onset of MH distress and
coping strategies
Provided bi-weekly follow up
appointments for 2 months
prior to full transition to help
eradicate and alleviate fear and
anxiety
Maintain case management
and social work until new
patient visit
Case 2 – Patient DC
• Perinatally-infected 23 y/o female
• Diagnosis in 1989 at age 1, been followed by
pediatric team for 22 years prior to transition
• Patient’s problem list includes:
–
–
–
–
–
–
–
–
HIV encephalopathy
Developmental delay
Asthma
Cervical dysplasia
Recurrent pneumonias- LIP, PCP
Candidia sepsis
Recurrent zoster
Non-adherence
Case 2 - DC
• Multiple prolonged hospital admissions
• Nadir 24 (2%)
• Multiple NRTI, NNRTI, and PI mutations
• Current medications include: Raltegravir, Etravirine, Tenofovir and
Emtricitabine
• Her mother died when she was 13 years old from AIDS
Case 2
GYN,
family
planning
services
HIV Care
Primary
care
Case
Management
Peer support
groups
Access to
multiple
providers
Involved in yearly
summer camp for
HIV infected
children
Psychological
services and grief
counseling
Pediatric
Services for DC
Flexible schedule
and appointment
times
Nutritional
consults and
services
Social work
Transition Process for DC
Initiate transition
discussion 3 years prior to
25th birthday
Identify and
establish adult
women’s provider 1
year prior to
transition
“Team”
management with
adult and pediatric
provider 9 months
prior
Case 2-DC
Follow up every 2 months
for 3 yrs to help improve
provide HIV education to
help improve compliance
Establish “goals” list with
patient to encourage
medical compliance 1 year
prior to transition
Independent visit with
adult provider 6
months prior
Co-manage opportunistic
infections
Increased involvement in
young adult support groups
to help patient engagement.
Final follow up visit
with pediatric
provider 3 months
prior
Establish adult
GYN follow up
for HGSIL 2 years
prior
Meet and establish
adult mental health
provider 1 year prior
Fully transitioned by
age 25. Pt has
continued case
management by
pediatric SW for 6
months post-transition
to increase adherence
Problems
Medical non-adherence,
worsening health
Multiple extended hospital
admissions during transition
time period
Large pill burden due to
multiple OIs and severe
immunosuppression
Case 2- DC
Solutions
Increased frequency of
medical visits
Multidisciplinary approach
to care to help increase
adherence to medication
Disengagement in care
Weekly pill tray filling at
clinic to ensure proper
medication administration
and adherence
High risk sexual behavior,
multiple STIs
Engagement in Women’s
support groups
Major depressive episode
during transition time
Increase psychological support
from adult provider prior to
transition
Key Take Home Points
• Begin the transition process early
• Use an individualized approach and plan
• Ensure communication
• Use a multidisciplinary transition team
• Address comprehensive care needs
• Involve the adolescent and his/her family
Questions/Comments
Transitional Youth Case Management
Washington University | Project ARK
Saint Louis, MO
Kathryn Tenkku MSW, LMSW
Adult Case Manager
Clients Served in CM @ WashU
Adult and Youth Programs
 Adult CM – served 1,308 unduplicated clients.
 1,218 Adults
 90 Youth
 Average case load – 80 clients
 Youth CM – served 349 unduplicated clients.
 131 Adults
 218 Youth
 Average case load – 45 clients
There is crossover between the Adult CM and Youth CM program unduplicated client totals.
The unduplicated total for both programs is 1,438 (1,245 adults and 238 youth).
Barriers within our System
 No formal transition program
 Time

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
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
 General cm requirements
CM schedules in order to meet Clients
Large case load
Inconsistent CM processes.
Staff turn over for CM and Clinic staff
Lack of services available
 Housing
 Substance use
 Self determination
What was currently in place ?
Youth Services
Adult Services
Phone is always answered | smaller case
loads
Less accessible | Bigger caseloads
Walk-in Space
Schedule appointments, leave messages
Easier access to bus tickets
Strict bus ticket policy
Remain open w/o referral
Closed 1 mo after referral exp.
Same doc every time
Different doc every time
Reminder calls for medical and CM
appointments
No reminder calls
Youth
25 yo
Adult
Where we started…
What was the
concern?
What was the
current transition
process?
Learn position as
new CM
What was the
difference b/t
programs?
Built Case Load
What barriers
were present?
Hired Jan 2013
What was the
goal?
How do we know
we measure
change?
What’s in the
research?
What is the concern?
• Client dropping out of care after transitioning to Adult CM
What qualified a client to out of care?
•No active referrals, incomplete 6 mo updates
•Not engaged in medical care
•No recent visits with a provider
•Not taking medication as prescribed
What were the most common barriers?
•Housing
•Lack of income
•Substance use
•Transportation
•Lack of medical knowledge
•Lack of insurance knowledge
•Denial of status
OUR GOAL
• Remain in care after transition to Adult CM
How would we do that? What Interventions?
What has already been done?
 MassCARE (adapted from “Transitioning HIV-infected adolescents into Adult Care”, HIV clinic guidelines and best
practices from New York Sate, New York State Department of Health AIDS Institute, 2011). (http://www.hivguidelines.org/quality-ofcare/best-practices-from-new-york-state/transitioning-hiv-infected-adolescents-into-adult-care/)
 Tabono Capacity Building Assistance (now called Community Impact
Solutions) ( 2011) (http://www.etr.org/CIS/focus-areas/prevention-with-positives/retention-readiness-indicator-tool-rrit-pdf/)




I. Identify clinician’s goals
II. Identify Strategies for Client to remain engaged in care.
III. Identify Barriers
IV. Identify a plan with the client
Defining Interventions
What do we actually do?
Mail 1 bus
ticket to get
to appt
Identify
importance of
leaving msg
Flexible with
schedule
times to meet
Email Clts
Fax Medicaid
applications
Warm hand
off to new CM
Meet Clt
during medical
appt.
Write down
tasks
Reminder calls
Peer referrals
Acknowledge
for being on
case load
Discuss
transition
program @ 1st
encounter
Discuss
importance of
making appts.
Increase
medical and
STI knowledge
Successful
Transition
ACCESSABILITY
How do we measure this?

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
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






with 4 clts, now 15
Tracked Behavior Change from intervention
Substance use
Medical appt
Update appt
Medical adherence
Labs
Risk behaviors
Insurance status
Housing
Started with a Likert scale, then moved to more defined scale.
Transitional Database
Are they engaged in Medical Care?
Can you name client medication?
Have they missed any doses?
Do they know their CD4 level?
Do they know their VL?
Recent STI?
Active with
their
Insurance?
What’s the
status?
• Did they meet their new Cm before transition?
• How are they doing after transition?
Outcomes so far
 Transferred 9 clients to Adult CM
 6 clients were tracked
 4 clients have had an update and have completed it on
time.
 Of the 6, 5 (83%) are retained in medical care.
 1 out of the 6 attend another clinic
 Organically using interventions with clients
 Creating an acuity for coming onto case load
Reason for acuity
Lessons Learned
 Start Small
 Don’t put pressure on making a perfect outcome
 Try it or we won’t know
 Every result is an outcome, no value (Neg or Pos)
 Don’t assume judgments when trying to do
something new.
Where we would like to go
 Enter interventions into data base
 Implementing acuity to use for transitional case load.
 Preparing client years in advance for transition
Questions?
 What are we missing?
 Any advice?
Question & Answer
55
Food for Thought
 Do certain subgroups of youth in transition do better
or worse than others?
 In addition to the strategies you’ve heard today, have
you tried others?
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Announcements
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Upcoming Deadlines and Topics
 Campaign Database Continuation

Database Active Through 2018

Measures Changed to Match HAB Core Measures

More Specificity in Funding, Facility Type, and Case Load

Enhanced Benchmarking Reports
 NQC ShareLab Rollout
58

Testing Has Already Begun

All Campaign Improvement Update Forms Entered

Analysis Allows Campaign Database to Interface with
ShareLab  Correlations Between Strategies and
Improvements
Campaign Headquarters:
National Quality Center (NQC)
90 Church Street, 13th floor
New York, NY 10007
Phone 212-417-4730
[email protected]
incareCampaign.org
youtube.com/incareCampaign
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