Transcript Adolescents Transition incare Slides 5.22.13

Campaign Webinar
Adolescent to Adult
Transitions in+care
May 22, 2013
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Agenda
1.
2.
3.
4.
5.
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Welcome & Introductions, 5min
Campaign Data Review, 10min
Transitions in+care, 30min
Question & Answer, 10min
Updates & Reminders, 5min
In the chat room,
Enter your:
1. name,
2. agency,
3. city/state, and
4. professional
role at agency
Medical Visit Frequency by RW Part Funding
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Viral Suppression by RW Part Funding
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Submit Improvement Updates!
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Improvement Update Discussion
Interventions Submitted by Participants
• Keep original case manager until patient is firmly rooted in
their new medical home
• Have first appt with new provider in the original care setting
• Consumer led movie nights for youth with food and discussion
at the adult care center where adolescents will transition
• Text reminders and follow-ups to improve adherence to tx plan
• Allow patients to communicate or make comments/suggestions
via text or online
• Conduct discovery interviews on both ends of the transition
and have providers compare notes on patient experience
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Improvement Update Discussion
Barriers Pertaining to Youth Noted by Participants
• Adult providers often lack the warmth and patience that
pediatric and adolescent care providers have, making
transitions hard
• Older teens demand maximum results with minimal effort
(hardest group to maintain based on their expectations)
• NJ Medicaid rollover process for new plans take 45-90 days
for each individual, which can lead to interruptions in care
• Challenging to enlist young consumers in quality committees
• Youth are embarrassed to admit having low health literacy
• Medical records have fields for cell phones, but not facebook
or other accounts that are commonly used by youth to interact
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Improvement Update Discussion
Lessons Learned Pertaining to Youth
• List individual patient barriers in the SOAP note; ensure list of
barriers transitions to adult care site with patient
• Adult providers need to be trained on how to effectively accept
young patients transitioning from pediatric care
• Patients are more responsive to a peer than a provider (unlike
adult patients)
• Meeting patients where they are at is the most critical thing
• Even teens with inconsistently connected cell phones make
updates on the facebook profiles meaning they have at least
some consistent access to facebook
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Transitioning HIV-Infected Adolescents
from Pediatric to Adult Care
Ashley Boylan MPH, PA-C.
Andres Camacho-Gonzalez MD, MSc.
Rana Chakraborty MD, PhD
Grady Infectious Disease Program-Ponce Family and Youth Clinic
Objectives
 Epidemiology of HIV Infection in the US among Adolescents and
Young Adults
 Discuss the challenges associated with transitioning HIV positive
youth to adult care
 Discussion of Perinatal and Horizontal HIV Infection and their longterm effects
 Describe evidence-based models/HIV clinical interventions for
transitioning youth to adult care
 Recent Recommendations
 Case Presentations
Epidemiology
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.
Transitioning to Adult Care
 Few studies in HIV infected adolescents and young adults
 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
Perinatal and Horizontal HIV Infection
during Adolescence
 2 distinct populations that require different approaches
 Horizontally infected
 Perinatally infected
 Adolescent-centered Care
 One-stop shopping model of multidisciplinary care
 Gynecologic services
 Mental Health
 Prevention and case management
 Flexible appointments and Walk-in capacity
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-Perinatally
Infected
 Non-disclosure by guardian
 Non-disclosure to caregiver
 Loss of emotional support
 High rates of homelessness &
incarceration
 Barriers in achieving
milestones
 Complex clinical issues
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
Adherence to ARV and Resistance in
Perinatal Cohorts
 PACTG 219
 10% increase in the odds of non-adherence for each year of age
 Perinatally-infected children in the US average a median of 5 HAART
regimens by the time they reach adult care.
 Resistance
 52% had dual class resistance
 12 had triple class-associated resistance
 Medication fatigue and high pill burden and increase responsibility for
medication administration
Long Terms Effects of HIV Infection
 CNS abnormalities
 Encephalopathy has decreased
 Cognitive deficits
 Attention deficits
 Cardiovascular Disease and Metabolic abnormalities
 Abnormal serum triglycerides and LDL cholesterol
 Increased carotid artery intima media thickness
 Fat redistribution
 Insulin resistance (7-52%)
Long Terms Effects of HIV infection
 Bone Loss
 HIV infected youth have altered bone metabolism and lower bone
mineral density than age-matched controls
 The pathogenesis is unclear
 Use of HAART may predispose to increase bone turnover
 Tenofovir has been associated with increase risk of having a
decrease in bone mineral density.
 Renal Disease
 Deaths due to renal disease have increased in HIV infected children
and adolescents
 Disease vs HAART
Transitioning to Adult Care
5 phase approach
 Discussion with patient
 Meeting of Adult provider in the adolescent clinic
 Check-up with the adult provider in the adolescent clinic
 First appointment wit the adult provider is accompanied by the
adolescent social worker
 1 year of follow-up with the adolescent physiological 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.
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
 Invite “alumni” to programs, special events or group meetings
Role of Adult Provider and Adult Clinic
 Assess maturity/ability to cope
 Increase time spent with patient
 Nonjudgmental approach to patient communication
 Increased flexibility regarding appointment times
 Explain clinic policies
Recommendations
New Specific Recommendations
 Pediatric, adolescent, and family medicine HIV care providers,
in collaboration with suitable adult HIV care providers, should
develop a formal process for transition of youth to adult health
care.
 The patient and his or her family should be introduced to the
concept of transition to adult health care early in adolescence
well in anticipation of the actual transfer of care. The youth
should be informed of his or her HIV status before initiating the
process.
PEDIATRICS Volume 132, Number 1, July 2013
There are 4 key steps in the transition
process:
 The referring provider should develop written policies to define the process of
transition of HIV-infected youth to adult health care. The plan should be
shared with all pediatric/ adolescent or family medicine providers, staff, and
patients and their families with appropriate staff training.
 The provider, the youth, and patient should jointly create an individualized
transition plan well in anticipation of transition.
 Transition should include creation of a portable medical summary and/or
EMR and an emergency care plan. A pre-transfer visit by the patient to meet
the adult health care provider should take place.
 Completion of the transition should be documented, and the outcome of the
process should be evaluated.
New Specific Recommendations
 The health care coverage of the youth should be evaluated
regularly to ensure that health care coverage and access to
medications remains uninterrupted during transition.
 The transition process should ensure that the youth’s health
care, educational, vocational, and social service needs are
discussed and addressed.
Example
Discuss
transition
Assessment by
provider
Medical Team
Meeting
Adult/Pediatric
Provider meeting
Youth &
Adult/Pediatric
meeting
Parent/Youth
Meeting
Transition
decision
Patient & Adult
Provider Meet
1st appointment w/
adult provider
Ponce Family and Youth Clinic
 Grady Infectious Disease Program under Grady Health Systems.
 Clinic funded by RW Parts A,B & D.
 Medical Home Model.
 Services need of >5200 patients with HIV/AIDS in Atlanta MSA.
 CY 2012: Grady IDP Pediatric/Adolescent Program served 376 youth
ages 13-24.
 In 1st four months of 2013 have seen and enrolled 34 newly infected
youth.
Profile of many newly diagnosed youth (1324 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
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
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
Case 1-DT
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 identifying
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 was13 years old from AIDS
Case 2
GYN,
family
planning
services
HIV Care
Primary
care
Case
Management
Peer support
groups
Access to
multiple
providers
Psychological
services and grief
counseling
Pediatric
Services for
DC
Flexible schedule
and appointment
times
Involved in yearly
summer camp for
HIV infected
children
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
Contact Information
Rana Chakraborty MD PhD & Andres Camacho-Gonzalez MD, MSc
Division of Infectious Diseases
Emory University School of Medicine
Uppergate Drive NE
30322
Office: (404) 727-5642
Ashley D. Boylan MPH, PA-C
Grady Infectious Disease Program
Pediatric Department
Atlanta, GA
Office: (404) 616-0653
[email protected]
2015
Atlanta, Georgia
Announcements
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Upcoming Events
Partners in+care Webinar: Linkages Between Mental Health and
Medical Services – May 29, 12pm ET
Journal Club Webinar: Timothy Minniear: “Delayed Entry Into and
Failure to Remain in HIV Care Among HIV-Infected Adolescents” –
May 30, 2pm ET
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Upcoming Deadlines and Topics
•
Campaign Monthly Topics:
― June Topic – Latinos and Retention
― July Topic – Patient Navigation
― August Topic – Refugees, Migrants and Retention
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•
Data Collection Submission Deadline:
June 3, 2013
•
Improvement Update Submission Deadline:
June 17, 2013
Time for Questions
and Answers
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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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