1

2

Training HCWs in pediatric

counseling increases pediatric ART enrollment and improves

retention: Lessons from Zambia

S. Strasser PhD Country Director (Zambia)

BACKGROUND

Pediatric ART enrollment and retention remain challenging.

Despite availability of antiretroviral (ARV) pediatric formulations, the proportion of HIV-positive children on antiretroviral therapy (ART) lags behind adults.

To address this in Zambia, 103 counselors were trained in 2009 using the ANECCA/CRS pediatric-HIV counseling course addressing key issues; adherence and disclosure.

Pediatric HIV is a complex family issue involving stigma, adherence, disclosure and developmental challenges.

Although disclosure is significantly associated with treatment adherence (Vreeman et al. 2008) and is a significant predictor of virologic suppression (Muller et al. 2011), historically there has been a lack of training on counseling HIV-affected children and families.

The Ministry of Health (MoH) of Zambia has advocated for improved pediatric HIV counseling and endorsed a training program in 2009 and a national pediatric mental health working group in April 2010.

• CKGROUND

Pediatric ART enrollment and retention remain challenging.

Despite availability of antiretroviral (ARV) pediatric formulations, the proportion of HIV-positive children on antiretroviral therapy (ART) lags behind adults in Zambia.

WHY focus on disclosure and PSS? AIDS-Related Mortality Trends in Children and Adolescents

(2000 – 2012)

0

50.000

100.000

150.000

200.000

250.000

2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012

Children aged 0–4 Children aged 5–9 Adolescents aged 10-19 Young people aged 20–24

What do adolescents and young people say are the key issues?

Key Issue 1: Disclosure

• Disclosure support for parents and caregivers of ALHIV is inadequate

• ALHIV often feel pressured by health care providers to disclose to sexual partners

• Little guidance or support offered to ALHIV to help them assess risks and benefits of disclosure to friends and family

Galvanizing the Movement to Scale-up Access to Optimal Treatment and related Care for Adolescents Living with HIV

Key Issue 2: Adherence

• ALHIV may find adherence to treatment challenging and choose to stop due to side-effects, treatment fatigue, self-stigma, fear of unwanted disclosure or changes in personal situation (as experienced by all adolescents)

• Complexity of treatment regimens (especially 2nd or 3rd line regimens)

• Poor treatment knowledge and understanding of the benefits of taking ART.

• Education sector challenges –ability to “step out” of class to take medication. Have to leave classes to attend clinics

• Health sector challenges – transition from paediatric to adult care (lose the familiar and dependable environment and staff of the paediatric HIV clinic and its support services.)

Galvanizing the Movement to Scale-up Access to Optimal Treatment and related Care for Adolescents Living with HIV

Key Issue 3: Stigma and Discrimination

• Stigma from health care providers prevents ALHIV from accessing essential services

• Stigma from family and caregivers prohibit ALHIV from disclosing their status and therefore obtaining much needed psychosocial support required to adhere to treatment

• Self stigma can impact ALHIV’s ability to take and adhere to treatment

Galvanizing the Movement to Scale-up Access to Optimal Treatment and related Care for Adolescents Living with HIV

Key Issue 4: Sexual and Reproductive Health and Rights

• Sexual and reproductive rights of ALHIV are not

recognised by service providers and society at large – often stigmatised

• SRH and HIV services are not integrated, thus represents a major barrier for ALHIV who need both services

• Age-appropriated, gender-sensitive, simplified IEC materials that support ALHIV to understand and address their SRH needs are not widely available.

• Family planning options for adolescents living with HIV – hormonal contraceptive interactions with ART lack of data

Galvanizing the Movement to Scale-up Access to Optimal Treatment and related Care for Adolescents Living with HIV

Key issue 5: Optimal drug regimens

• Side effects negatively impact ALHIV health

• Adolescents living with HIV since birth are affected by sub optimal paediatric formulations and then later lack ART options, especially for 2nd and 3rd line

• Taking medications regularly becomes difficult during adolescence

*Pill Burden* Missing triple fixed dose combinations for children

Only one (:AZT/3TC/NVP) is available.

Method: Learning by doing

The difference between Q4 2008 and Q4 2009 enrollment and

attrition of children (0-14 years) and adults on ART in Zambian clinics were evaluated in sites with and without trained counselors using paired t tests.

– Included sites had to have active pediatric ART programs.

Of 58 sites reporting in both quarters, 47 sites (30 with a trained counselor/17 without) met enrollment criteria and 55 sites met attrition criteria (3 sites had no attrition).

– Enrollment criteria included sites with > 0 enrollment in both quarters.

Attrition was calculated as number of children 0-14 years on ART exiting the program during the quarter (excluding transfer-outs) over number of children on ART at the beginning of the quarter.

RESULTS

In sites with trained counselors, Quarter 4 2008 and

2009 mean pediatric ART enrollment increased from 13.7 to 18.8 children (P< .01).

Adult enrollment also increased in these sites: 165.6 to 208.1 (P<.01). – Yet, there was a larger increase in pediatric versus

adult enrollment: 51.4% versus 26.9% (P=.06). In sites without counselors, there wasn´t a significant

change in mean pediatric enrollment 6.6 to 4 (P=.17) or adult enrollment 54.6 to 57.6, (P=.26).

In 55 sites meeting attrition analysis, average pediatric attrition rate was lower in sites with counselors than in sites without; 7.1% versus 10.7% (P=.02).

DISCUSSION

Pediatric ART enrollment and retention increased more in sites with trained pediatric counselors than in sites without.

Enrollment of children outpaced adults in sites with pediatric counselors, yet adult enrollment also increased significantly, possibly reflecting improved counseling to children and families.

This analysis used routinely collected program data and therefore didn't control for other variables or confounders, such as other initiatives to improve pediatric enrollment and retention.

A larger, matched case-control study is recommended.

15

What else is being done to improve testing, adherence and

retention

Globally

http://www.who.int/hiv/pub/guidelines/adolescents/en/index.html http://www.who.int/hiv/pub/guidelines/arv2013/en/

http://www.who.int/hiv/pub/vct/adolescents/en/index.html Rachel Baggaley, Alice Armstrong, HIV DepartmentJane Ferguson, MCA Department, WHO

Nationally

Locally

What we are learning

• Adolescent care and support needs strengthening, centrally located due to low funding

• Disclosure still a major adherence barrier • Peer support and step-wise disclosure

strategies are helpful for “difficult conversations”

• HIV services still very adult centered.

“No one ever asked us for this before, you are the first ones!” (Mylan Labs regional manager, March 2014)

Extra Information

Consent to testing • The requirement for parental/guardian/caregiver consent can be a barrier

for adolescents in accepting HTC, care, & services

• The ages at which adolescents can consent for HTC varies widely from 12 to >18 years

• Many countries have 'exceptions' for ‘mature minors’ e.g. pregnant adolescents, child-headed households

• Countries where age of consent for HTC has been lowered (e.g. to 12 years in South Africa) – no adverse consequences

• Countries are encouraged to examine their current consent policies and consider revision them to reduce age related barriers to access and uptake of HTC and linkage to prevention, treatment and care following testing.

No global guideline. Not able to address with GRADE –reflecting human rights and ethical issues, propose that countries review consent polices to facilitate access to HTC & other health service delivery for adolescents

Disclosure recommendations Disclosure to adolescents • All adolescents should be disclosed to about their HIV status • All adolescents should be disclosed to about the HIV status of

their parents/guardians

Disclosure by adolescents • Adolescents should be counselled about the potential benefits

and risks of disclosure of their HIV status and empowered and supported to determine if, when, how, and to whom to disclose – Disclosure of HIV status has many benefits - disclosure for support –

family, partner, friends – But disclosure to sexual partners and for adolescents especially from key

populations –stigma, discrimination, legal and criminalization issues

Recommendations to support retention in care and adherence to ART

Community based care and support • Community-based approaches can improve

adherence and retention of adolescents living with HIV

Health worker training • Training of health care providers can contribute to

improved adherence to treatment and retention in care among adolescents living with HIV

Mobile phone text messages • could be considered as a reminder tool for

promoting adherence to ART as part of a package of adherence interventions

Decentralization of HIV care & treatment: • Initiation of ART in hospitals with maintenance of

ART in peripheral health facilities • Initiation and maintenance of ART in peripheral

health facilities • Initiation of ART at peripheral health facilities with

maintenance at the community level between regular clinical visits

Integration with TB, ANC, & IDU services\ • In ANC • TB treatment settings • In care settings where opioid substitution therapy

(OST) is provided

Task shifting for HIV care & treatment • Trained non-physician clinicians, midwives and

nurses can initiate and maintain first-line ART • Trained and supervised community health

workers can dispense ART between regular clinical visits

Good practice examples

1. Health facility tailored to adolescents: Whizzkids United Health Academy: Kwa-Zulu Natal, South Africa

2. Support for transition from paediatric to adult care: Movin’ on Out: New York City, USA

3. Adolescent friendly treatment literacy materials: treatment literacy portal for parents and ALHIV (Russian): http://teensplus.ru/

4. Research to better understand drug failure among this community- TREAT Asia is coordinating a study of children on second-line ART to monitor them for resistance to protease inhibitors and assess adherence practices

Factors associated with adherence and retention

• Psychosocial wellbeing is linked to treatment adherence (Lowenthal et al, 2011; AIDSTAR-One Project, 2011)

• Disclosure is difficult but – is significantly associated with treatment

adherence (Vreeman et al. 2008)

– is a significant predictor of virologic suppression (Muller et al. 2011)

What next?

• Continue “learning by doing” and document/disseminate results – NRD for all programs is in process – Present and publish as much as possible

• Meetings and conferences (special issue of “Growing up with HIV” in press)

– TWG’s (local and IATT) – GHC fellows

• Explore alternative sources of funding to continue and to scale up programs with known outcomes/impact

Acknowledgements

• Catherine Connor, Mary Pat Keiffer and Racine Tucker Hamilton • New business and Andrea Uehling for helping with our business plan • Andrea U. and PSC for supporting increased documentation • EGPAF Zambia pediatric team: Martin Phiri, Susan Tonga, Sam Nyirenda,

Stephanie Ahn, Suzanna Bright, Jack Menke, Veronica Tembo, Thandiwe Ngoma, Elizabeth Chisenga and Elizabeth Chatora, Charles, Godwin Chisenga, Kapembwa Kangwa.

• Chip for pushing the adolescent agenda