Teen to Grown-upFalling through the Cracks, Lost in the
Crowd or Thriving Adult?
Linda-Gail Bekker
The Desmond Tutu HIV Centre
The University of Cape Town
Kuala Lumpur, Malaysia 2013
almost
2 billion
people are between the ages of 10 and 24 years
Source: Population Reference Bureau, 2006
More than 1 in every 10
patients has a chronic
condition - 90% will continue
into adulthood.
Blum RW, JAH 1995,
Callahan, et al COP 2001
Adolescents with special health
needs….
either
Continue in paediatric services –
• With inherent complications and
confusion.
or
get “transferred” to adult services –
• With potential risks to disease
stability, adherence and retention in
care
“Risks” of HC transfer….
Paediatric
Care
Health Care Transfer
Adult
Care
Decreased Adherence to Medication
Erratic appointment keeping
Loss of Disease control
Loss to Follow up
Pitfalls of HCTAdherence :
– To Appointments :
• IDDM-regular attendance 98% before and 61% after
• More ketoacidosis
– To Medication :
• Poorer blood levels of Tacrolimus in liver transplant
patients in “transition”. Graft failures 40%
Pai, Ostendorf. Children’s health care 2011
Canada : Hospital for Sick Children Database
– 360 patients - Congenital Heart Disease 19-21 yrs
– Attendance as an adult at adult clinic
– 47% transferred successfully
– Successful transfer : documented recommendation, patient belief
in adult clinic, other self-reliant behaviours.
Reid G, et al Paediatrics 2004
There is a need for
HEALTH CARE TRANSITION
from child to adult
services….
That is safe and effective
Blum RW, JAH 1995,
Callahan, et al COP 2001
6 Critical first steps.
•
•
•
•
•
•
A specific HC provider.
Core competencies.
Accessible medical summary.
Detailed transition plans.
Same standards of health.
Access to services.
• Plan with patient and
family
• Develop best practices
for specific conditions
• More research of
outcomes
2003: Consensus statement Including Society for Adolescent Medicine
Health Care Transition
- The purposeful, planned movement of
adolescents and young adults with chronic
physical and medical conditions from childcentred to adult-oriented health care systems-.
Discussed frequentlyBut studied rarely…
Scal, Ireland. Paediatrics 2005
HC “Transfer” is an event….
HC “Transition” is a process in
which transfer is only one
component.
Barriers to HCT
• Health system: Inertia created by stability.
• Rosen DS Cancer 1993, Johnson CP P Annals 1995
• The Paediatric Provider:
– wont let go or wont be released.
• Johnson CP P Annals 1995; AAP 2000.
• The Adult Provider:
– lack expertise, extra demand (time and resources) of
“complex patient.”
• AAP 2000;Earl DT Prim Care 1998
• Patient and Family/care giver:
– Abandonment, anxiety, loss of control.
• Viner R Hosp Med 2000
HCT is done badly, or not at all• Cross sectional study 4332 adolescents
– 2000-2001 National survey of children with
special health needs
• 50% had discussed transition with HCP
• 30% had a plan developed
• ONLY 16% had a comprehensive plan
• Good relationship family-HCP
• Greater number of needed services
• Female, older patient
Scal P, Ireland M Paediatrics 2005
How are we doing
in HIV?
3.4 million under
15 years
living with HIV
SOURCE: WHO,UNAIDS,UNICEF Global HIV response: 2011 report
Kicosehp NGO (support group for people living
with HIV/AIDS). Kenya, Africa. © UNAIDS/G. Pirozzi
Today most
will live
into
adulthood…
11-year-old Thai girl prepares her ARV
meds
© 2004 Joanne Wong
Adolescents (10 – 19) Living with HIV
2.1 million [1.6 million – 2.6 million] of whom 60% are girls (2011)
Source:
• Regional summaries by gender: UNICEF, Progress for Children, 2012 derived from 2010 estimates
• Country data: UNAIDS 2009 estimates
Two populations-
Perinatally infected youth, pHIVa
•
•
•
•
•
•
F=M
Younger
Developmental stunting
>treatment experienced
Unaware of status
Transitioned ex Paediatric
Care
• Transition into Adult Care
Sexual and IDU Transmission, bHIVa
•
•
•
•
•
•
F > M in Africa
M>F elsewhere
Older
Treatment naïve
Aware of status
Transition into adult care
Two Adolescent Populations in care:
Hannan-CRUSAID, Cape Town.
Robson V, DTHC unpublished
Two Adolescent Populations in care:
Hannan-CRUSAID, Cape Town.
Robson V, DTHC unpublished
Adolescents (10-19yo) living with HIV:
South Africa.
Leigh Johnson 2013
4%
373 000
pHIVa
+
bHIVa
bHIVa
A history of perinatal HIV
50% @ 2 years
Mono/
Dual ART cART
Universal
access
Ferrand R, et al AIDS 2007
Paediatric Mortality
36% are slow-progressors
with median survival = 16.0 years.
MTCT
30%
Long term survivors
76% Reduction
in mortality
pHIV
MTCT <2%
88
Year
90
92
94
96
98
00
02
04
06
08
10
12
14
Our 11-24 year olds : 1989-2002
Universal
access
Dual/mono ART cART
50% Survival
Paediatric Mortality
MTCT
Long term survivors
<1%
mortality
pHIV
MTCT
<1%
88
90
92
94
96
98
00
02
04
06
08
10
12
14
The paediatric HIV
legacy
• In resource rich settings:
– ART experienced (mean > 10 years)
– Suboptimal regimens before (mono-dual-)
– PHACS cohort :
• 10-20% cART as first regimen
• Mean exposure: 7 antiviral agents
• In resource-limited settings:
– Present later
– More cART at initiation (delay in access)
– But this is changing with new guidelines and universal
access.
Burden of HIV infection:
children <15 yrs
N America: 4500
49% >15 yrs
Mortality<1%
Latin America/Caribbean :
60 000 >15yrs
W/C Europe: 1600
50%>15 years
Mortality<1%
Asia-Pacific 180 000
39% ART coverage
SSA: 3 M
S/E Africa: 2.2 M
W Africa : 990 000
21% ART coverage
Sohn A, Hazra R. JIAS 2013
The Paediatric legacy for Adult services:
Collaborative HIV Paediatric Study cohort
(CHIPS)(UK and Ireland- 1996-2007)
654 perinatally infected (76% Black African)
• 64% on ART (mean 10 years)
• CD4 < 200 : 27.2%
• 518 on ART:
– 47% triple class experienced
– 78% virally suppressed
Foster C, et al AIDS Patient Care and STDs 2009
The Paediatric legacy for Adult services:
TApHOD Cohort
• July 1991-March 2011, 18 clinics in Asia
• >12 years, perinatally infected with 6 mo f/up
– 1, 254 with median ART duration 6yrs
– 85% in active follow up, (2.6% died, 4.2% LTFU)
– Mortality 0.93/100 person yrs after 12
– >2nd line ART or VL >10 000 or CD4 <500
Chokephaibulkit K, et al Peds Infect Dis 2013 in press
Adolescents in care in IeDEA Southern Africa
– December 2011
35000
3000
30000
2500
25000
Started ART at ≥12 years of age
Includes perinatally &
behaviourally infected;
median time on ART 28 months
2000
20000
1500
Started ≥12 years
15000
StartedStarted
ART<12atyears
<12 years of age
Presumed perinatal infection
median time on ART 65 months
1000
10000
5000
500
0
0
Ever started ART at <16
years
All 15-20 years by December
2011
Characteristics at last visit
Median BMI-for-age z-score (IQR)
Median CD4 (IQR)
CD4 <200 (%)
Viral load >400 at last visit (%)
-0.72 (-1.61 to 0.08)
513 (320 - 711)
11%
39%
Davies M; Cornell M, Boulle A. Personal Communication 2013
Adolescents (11-19yo) at Hannan-Crusaid Clinic 31 Mar 2013
Commenced treatment
n= 361
Transferred out
n= 45 (12.5%)
Loss to follow-up
n= 77(21.3%)
Continue on treatment
n= 230 (63.7%)
First regimen
n= 193 (83.9%)
Adolescents remaining in care: 230
Median time in care: 4.6 yrs
Median CD4 : 286cells/mm
VL >1000 : 23%
Died on treatment
n= 9 (2.5%)
Second regimen
n= 37 (16.1%)
The Young and the Resistant
Canada: 45 youth transferred to adult services
• 38/45 resistance testing:
– 73% resistance to single drug
– 31.6% resistant to 3 classes
Van der Linden D, et al J Paed Inf Dis Soc 2012
CHIPS Cohort : 166 resistance assays
52% Dual class resistance
12% Triple class resistance
Foster C, et al AIDS Patient Care and STDs 2009
Hanan-Crusaid Clinic, CT : 78 children on 2nd line,
20% failed -TAMS : 62% ; PR : 50% in those on full dose Rtvr
Orrell C, et al Ped IDJ 2013
Special Issue
Perinatally HIV-infected adolescents
Guest-editors: Lynne Mofenson & Mark Cotton
Chronic lung disease
Cardiac effects
Disclosure
Bone health
Neurodevelopment
Kidney disease
Treatment
Metabolic complications
Epidemiology
Mental health
Access for free at www.jiasociety.org
Or pick a free copy at the IAS booth
Adolescence is a Developmental Transition
Pre-adolescence
10-13 years
Middle Adolescence
14-16 years
Late Adolescence
17-20 years
Emerging Adulthood
21-25 years
Adolescents with
chronic disease…
• Developmental delays
– Psychosocial, emotional, physical
•
•
•
•
More social isolation, suicide and depression
More likely to take risks that impact health
Poor adherence to have greater impact
Concerns about body image
overshadowed/exaggerated
• Feelings of isolation when all adult focus on
condition.
Blum RW, JAH1995; Britto,et al Paed 1998, APAMed 1999Brown JCPP 2000; Watson Paed Neph 2000;Timms BrJN 1999
Additional issues
with HIV infection.
• Cognitive, physical, emotional delays
• Increased perceptions of stigma and
discrimination
• Issues with disclosure to HCW, partners,
others
• Issues with sexuality, fertility intent.
• Parental loss, family sickness.
Separations and Autonomy
Transition in adolescence from teen to adulthood
Garvey, et al Curr Diab Rep 2012
Separations and Autonomy
Transition in adolescence from teen to adulthood
Transition in Health care from Paediatric to Adult care
Family
Family
Family
Pt
Patient
CHILDHOOD
ADOLESCENCE
Patient
ADULTHOOD
Garvey, et al Curr Diab Rep 2012
Complex interactions…..
CHRONIC DISEASE
ADOLESCENCE
SUCCESSFUL
ADOLESCENT
DEVELOPMENT
CHRONIC DISEASE
CONTROL
HEALTH CARE TRANSITION
Impact of HC Transition on HIV care
Adult Clinic
Health System.
Different venue
Transportation
Inadequate cover
Inadequate
communication
Poor mental health
support
Non youth friendly SRHs,
LGBTs, SUs.
Adolescent
Social isolation
Fear of Disclosure
Decreased adherence
Reluctance to “retell”
history
Paediatric service is
“family”
Fair C, et al AIDS CARE 2011
Health Services
Paediatric
Services
(Specialised,
Comprehensive)
Adult
(Primary Health Care)
Health Services
Paediatric
Services
(Specialised,
Comprehensive)
Adolescent
Health
Services
(Specialised)
Adult
(Primary Health Care)
The Desmond Tutu HIV Youth
Centre HealthZone, Masiphumelele
Paediatric/Adolescent
• Comprehensive, specialist
• Personal and individualised
• 1-STOP shop
• Same care provider
• Psychosocial support
• Adherence support
• Less waiting
• More friendly environment
Adult primary health clinic, SA
•
•
•
•
•
•
•
Adult
Primary Health
Fragmented services
“Impersonal”, ++ providers
lack mental health support
Longer waits
Intimidating waiting rooms
SRHs often better….
“Falling through the cracks…”
Paediatric
Services
(Specialised,
Comprehensive)
Paediatric
Services
Adult
(Primary Health Care)
Adolescent
Health
Services
(Specialised)
Adult
(PHC)
Some primary health settings
Adoles
cents
Children
FAMILY CARE
Adults
ATTITUDE AND
AWARENESS
May offer separate paediatric, (adolescent), adult services
- in one primary care unit.
Older adolescents falling out of
care in the HIV research network
(USA).
2002 - 2008, 120 HIV-infected adolescents were
in-care prior to their 18th birthday;
– 10% of 18 year olds were lost to follow-up.
– There were no differences in gender, insured status,
CD4, and HAART prescription between adolescents
LTFU and those remaining in care.
– Care at an adult HIV site was associated with a
greater likelihood of attrition.
Agwu A, et al
MOPE061 - Poster Exhibition
Multiple position papers…
All agree:
Continuous, coordinated, culturally appropriate,
compassionate, collaborative, family centred…..
Evidence based…..
Little data on best practices and even fewer on
outcomes.
“We never thought this would
happen…..”
AIDS CARE program in New Haven, Conneticut, USA.
CHALLENGES TO CARE
BARRIERS TO HCT
• Poor adherence to
medication regimens
• Adolescent sexuality
• Disorganised social
environments
• Families’ negative
perception
• Stigma
• Lack of autonomy
• Reliance on previous
relationships
Vijayan T , et al AIDS Care 2009
Review of 14 ATN sites in USA
Interviews with 19 key informants
– 50% preferred to transition 22-24yrs
– Some started at 16, “immediately” or at point of
transfer.
– Various models of care :
• Making an adult clinic appointment (event)-program to
provide life skills development (process)
– 6/14 had written transition guidelines
– Some had specific tools for readiness, etc
Gilliam P, et al 2011
Facilitators of Successful
HCT
Intrinsic
Extrinsic
• Emotional maturity
• Ability and motivation to
function independently
• Strong Social Support
systems
• Health cover/insurance
• Transportation
• Stable housing
Fair C, et al AIDS Care 2011
Timing of HCT in HIV
No established measures of
“readiness”
No consensus on BEST time…..
Some Recommendations on Timing• Chronological Age insufficient guide
• Consider physical, psychosocial and emotional
maturity.
• Start Transition preparation early!
–
–
–
–
Ongoing appropriate education
Assign and assume more responsibility with time
Spend some time in the clinic with provider alone
Regularly assess self-care skills
• Check-list for readiness
• Planning requires participation by patient, family,
pediatric and adult care providers.
Viner R,2000; Johnson CP 1995; White PH 1997; Betz CL 1998
Nature of HCT Programs
Unclear whether Disease specific
Models are best….
Transition programs
• Review of 122 Transition programs of young
adults with diverse chronic conditions
– 36% Condition focused (condition specific)
– 26% Specialty focused (number of related health
conditions)
– Few were within Primary Health Care
– Few controlled data to say which whether
programs improve health outcomes and whether
they should be disease specific.
Scal P, et al. JAH 1999
Lessons from Diabetes Mellitus
1.The Maestro Project : “care coordinator”
– Canada. 18-25 year old IDDM patients
– Transition navigator “Maestro”
– Gives support across care
2. The Transition Evening Clinic :
- UK; 12 month period
- Both Adult and Paed providers meet with
transitioning patients at an evening clinic
3. Young adult support groups:
-USA, 18-30 years for 5 months during transition
Garvey K, et al Curr Diab Rep 2012
WWW.Got Transition
Best models:
HIV Transition Programs
Emerging data….
“Movin’Out” –
Miami, Florida
– Behaviourally infected youth
(13-25y)
– Phased approach (5 phases)
– Joint meetings of Adult and
Adol services
– Some consultations at the
adult clinic
– Counseled throughout
– Assessed for treatment
readiness
– Transition commenced at age
23
– One year follow up for
assessment of success
Infectious Disease InstituteKampala, Uganda
– Behaviourally infected youth (15-24y)
– Phased approach (6 phases)
– Some consultations at Adult clinic
– Counseled throughout
– Assessed for treatment readiness
• Transition commenced at age 25
– One year follow up for assessment of success
Katsuiime C, et al SAJHMED 2013
Kampala: Qualitative outcomes30 of 80 participants transitioned in 2010
• Adjusting to adult health care providers
– “I feel like I am being separated from my mother….”
• Adult clinic logistics
– “some are not friendly and some bark at me”
• Some positive attributes of adult care
– “I see the health worker every 3 months”
• Transfer to other health centres
– “ I had to be transferred to another clinic”
• Perceived stigma
– “they (adult patients) look at me in an accusing way…..”
Katsuiime C, et al SAJHMED 2013
CHAMP:
Collaborative HIV/AIDS Mental Health Project
In multiple RCTs: Significant improvement in
Family outcomes (parent-child communication, supervision, support)
&
Youth outcomes (mental health, self esteem, reduced participation in
situations of sexual possibility)
 US: CHAMP-Chicago (NIMHR0150423;
PI: McKay)
 US: CHAMP-NY (NIMHR01MH55701;
PI: McKay)
 Trinidad: CHAMPT&T (Baptiste et al, 2006)
 South Africa: CHAMPSA (NIMHR01MH64872;
PI: Bell)
 US: CHAMP+: (NIMHR34MH72382;PI: McKay)
 South Africa: VUKA (NINR: R21 NR010474; PI
Mellins; NICHDR01; PI Mckay)
 Argentina: CHAMP+ (NIMHR03;PI Mckay)
CHAMP+ Asia
• Family-based intervention
– Promote mental health and reduce risk behavior in
Thai and Indonesian PaHIV+ 12-16 years old
– Use cartoon-based curriculum
• Key issues from focus group discussions
–
–
–
–
Stigma and discrimination
Increasing need for knowledge about HIV
Poor communication between caregivers and teens
Difficulty in communicating emotions because of
cultural and religious constraints
– Difficulty in disclosing HIV status
PI: Jintanat Ananworanich (Bangkok) and Nia Kurniati (Jakarta).
Indicators of success
Pre
transition
viral
control
Family
knowledge
Mental
health
status
Age
Successful
Transition
Self
efficacy
and
reliance
ART
options
Transition
plan
Behavioural:
• Adherence to care
• Adherence to meds
• Accountability for
care
Laboratory Indicators:
• Viral load
• CD4 T Cell count
History of
HIV
Support
Fair C, et al AIDS CARE 2011
Quantitative outcome data: 2 studies
Wiener L, et al
Social Work in Health Care, 46, 1–19.
65 pHIVa :
51 enrolled HCT intervention
over 7 months.
14 opted out and chose not
to have intervention.
Transition readiness score
and anxiety levels better in
group who had intervention.
Wiener L et al
Journal of Ped Psych 36(2) pp. 141–154
59 youth (mean age 22 years)
Measure: Transition experience,
demographics, and health
status.
Result: immune function (CD4)
trended downward,
45% found the transition more
difficult than anticipated,
32% could not find emotional
support services.
“Lost in the crowd”
“However, unless national HIV programs and
UNIADS create mechanisms to count and keep
track of the perinatally infected [and infected
youth] we will not know how many of these
children are, and are not surviving into
adulthood. Every year that goes by that this is
not captured means that children could be
“lost in the crowd”.
Sohn A and Hazra R. JIAS 2013
Hannan-CRUSAID Transition study
• Barriers to HCT
– Mental health issues
– Trusting a new provider
– Stigma and
Discrimination
– More time off school
– Neurocognitive delays
– Intimidating surrounds
– Physical stunting
30 Health care workers
Self administered questionnaire
ARV Clinic Counselors
3
1
Adult HIV Care
Provider
2
12
Paediatric Provider
Youth CAB members
12
Primary Care Providers
(non-necessarily HIVspecific)
Snyder K, Robson V, Kalumbo C, Wallace M, DTHC, CT.
Youth-Prejudice…
“I was there [at the adult clinic] it was full and I was
standing outside with other people and then the
people looked at me because I’m young …it was a
way of judging and then the other one asked me
how long I’ve been on treatment and I said for 11
years… and I was like “ no I was born with it”. So
they had been asking themselves all along …….”
(Perintally infected female, age 20)
Snyder K, Robson V, Wallace M, DTHC, CT.
Hanan-CRUSAID Youth having fun with Sisanda Fundation
Value of support and solidarity
“Because in an adolescents’ clinic – I think it is a
world where you meet people that share the same
challenges as you, the same disadvantages as you.
So you can talk about it. - as long as you are with
people that are in your age group you don’t get that
pressure as if a bunch of people are looking at you
funny.”
(20 yo perinatally infected male)
Snyder K, Robson V, Wallace M, DTHC, CT.
Benefits of HCT
“Moving to adult care? There should be benefits
in moving to adult care. Like telling us that we’ll
be spending less time at the clinic. Um, telling us
that our meds can be delivered if they have to if
they can’t make it to the clinic. Stuff like that.
(Male, age 20, Luyanda)
Snyder K, Robson V, Wallace M, DTHC, CT.
Hlanganani HCT model
Based on Hlanganani LTC Program.
Readiness
Assessment
Readiness
Assessment
Readiness
Assessment
ADULT
19-22 years
Vocation/career
16-18 years
Independent living
Sexual health
10-12 years
Disclosure
HIV information
13-15 years
Preventive health
Adherence to
medication
Positive prevention
Adherence to
Program
Family planning
Family support
Transportation
Paediatric
Service
•
•
•
•
Theory: Safe Social spaces and social capital
Monthly, Group based
Trained Lay Facilitator led
Interactive and fun!!
Aquino L, et al SAAIDS 2010
Hlanganani HCT model
Based on Hlanganani LTC Program.
YOUTH
ADHERENCE CLUBS
ADULT
19-22 years
Vocation/career
16-18 years
ADULT
CLUBS
Independent living
Sexual health
10-12 years
Disclosure
HIV information
13-15 years
Preventive health
Adherence to
medication
Positive prevention
Adherence to
Program
Family planning
Family support
Transportation
Paediatric
Service
•
•
•
•
•
Theory: Safe Social spaces and social capital
Monthly
Group based
Trained Lay Facilitator led
interactive
Recommendations
• Individualize, involve, Review. Be flexible!
• Identify WILLING adult care providers –involve early
• Begin early and ensure communication prior to and during
transition
• Develop a transition plan in the pediatric/adolescent clinic; and
an orientation plan in the adult clinic.
• Use a multidisciplinary transition team, which may include peers
who are in the process of transitioning or who have transitioned
successfully
• Address comprehensive care needs as part of transition: medical,
psychosocial, and financial aspects of transitioning
• Assess readiness to progress
• Allow adolescents to express their opinions !
• Educate HIV care teams and staff about transitioning
• Evaluate outcomes and adjust model accordingly.
US Dept of Health and Human Services; NY state Health.
Hope for the future….
(Future Fighters- DTHF)
“These pills can help me. I will finish school.”
(14yo F).
“I will finish school and find work”
(11yo M).
“I want to marry and have children” (13yo F).
Holelo P, et al UCT Unpublished.
The final word…..
The Archbishop Emeritus Desmond Tutu, St Georges Cathedral, Cape Town, June 2013.
Acknowledgements
The Arch
Co-Author : Annette Sohn
JAIS Adolescent supplement Editors and Authors
Leigh Johnson, School of Public Health, UCT
Mary-Davies, Morna Cornell, Andrew Boulle, IDEAA,SA
CHAMP- Jintanat Ananworanich, Claude Mellins
Richard Kaplan and DTHF Treatment Team
DTHF Adolescent Research Division –
Melissa Wallace (Div Leader)
Kate Snyder (Hlanganani)
Donna Futterman, Stephen Stafford –ACTS (Hlanganani)
Dr. Cathy Kalumbo ( Leader: H-C Clinic)
Dante Robbertze (DTHF Youth Centre)
Victoria Robson (Research Assistant and intern)
Future Fighters (Youth CAB, DTHF)
Future Fighters
(Youth CAB, DTHF)
Funders: NIH, Sisanda Fundation, DTHF, IAVI, CDC, HVTN, PEPFAR
USAID. DoH, PAWC.
Young People and their Families