PowerPoint Presentation

Evaluation of a specialized psychosocial support intervention Teen Club in improving retention among adolescents on antiretroviral treatment (ART) at a tertiary referral hospital in Malawi

M. Agarwal1,2, M. Van Lettow1,3, J. Berman1, C. Gondwe1, E. Mwinjiwa1 and A.K. Chan1,3,4

7th IAS Conference on HIV Pathogenesis Treatment and PreventionJuly 2013, Kuala Lumpur, Malaysia

1 Dignitas International, Zomba, Malawi2 Columbia University Mailman School of Public Health, Department of Epidemiology, New York, United States 3 Dalla Lana School of Public Health, University of Toronto, Canada4 Div. of Infectious Diseases, Dept. of Medicine, U. of Toronto, Canada

It is an honour to present on behalf of my colleagues in Malawi, Zomba Central Hospital, and Dignitas International. This is an program evaluation of a dedicated Teen Club for HIV+ adolescents on ART at a tertiary HIV clinic in Zomba, which is the central referral hospital for Southeast Malawi.1Disclosure/Conflicts of InterestThe authors of the paper declare no bias or conflict of interestAll photos used with permission

Skip past quickly2Global Context: HIV+ Adolescents4.9 million young people (15-24) living with HIV 201175% in sub-Saharan AfricaYoung people account for 40% of new infections in adults (>15+)UNAIDS 2012Challenges for HIV+ AdolescentsChanging physiological and psychological maturityDeveloping sexual identityManaging livelihood security in addition to healthStigmatizing attitudes from peers and community leads to isolation

An estimated 4.9 million young people aged 15 to 24 were living with HIV in 2011 and 75% of them live in Sub-Saharan Africa. Up until recently there has been little concerted effort at the national program level to address gaps between the growing needs of adolescents living with HIV and their access to a range of HIV services.

Adolescents living with HIV present a unique challenge for service providers, as these teens are learning to cope with their HIV status and illness, in addition to issues associated with rapidly changing physiological and psychological maturity. HIV-positive adolescents are particularly prone to risky social and sexual behaviors, poor medication adherence and treatment failure. Many adolescents living with HIV may be orphans, and may be managing concerns about food security, livelihood and shelter in addition to their health. The stigma around HIV from peers at school or in their community may also compromise their adherence to medication. If safety nets in the form of targeted psychosocial support interventions are not put in place throughout Malawi in the very near future, these adolescents will be condemned to treatment failure, and this will reverse the great strides we have made in preventing and combating pediatric HIV.

3NATIONAL ART PROGRAMBegan in 2004HIV seroprevalence currently 12% Over 500,000 ever initiated on ARTPopulation: 15 million

ZOMBA CENTRAL HOSPITALReferral hospital for SE Zone (population 3.1 million)20,000 initiated on ART (10% pediatric)

Community Health Workers doing health promotion at a secondary school in Zomba District, SE Zone, MalawiMalawi Context: HIV+ Adolescents

LILONGWENational roll out of ART in Malawi began in 2004. Since that time, the Malawi Ministry of Health, with the support of various NGOs and academic organizations have enrolled over half a million HIV+ individuals on ART. In 2004, Dignitas International, a Canadian NGO, helped the Ministry of Health set up a tertiary referral HIV clinic at Zomba Central Hospital. Since that time, DI has expanded support to the Malawi Ministry of Health to over 140 health centers in the South East Zone of Malawi (which has a catchment population of 3.1 million people).

4Malawi Context: LTFU from ART at Tisungane Clinic

The highest risk age group for LTFU were young adults between the ages of 15-24 Chan AK et al, Trop Med Int Health 2010 15(s1):1-8About 5 years into scale up, we looked at operational data around risk factors for LTFU.

These are survival curves from the first five years of ART roll out (2004-2009) for LTFU from ART disaggregated by pre-defined age groups as per Malawi MOH M and E plan. Although children from 0-14 had the highest rates of retention (square boxes) in young adults between the ages of 15-24, the LTFU drops significantly (the circles). We know in this group that defaulting is not due to mortality as this group also had the lowest risk of death of all of the age groups. It was based on this data that Dignitas made the decision to begin a targeted adolescent intervention at Tisungane Clinic, Zomba Central Hospital in 2010, with the initial support of Baylor College of Medicine in Malawi.

5Intervention: Teen ClubA streamlined adaptation of the Baylor Malawi Teen Club Model for a Ministry of Health run clinicConducted every 4 weeks on a SaturdayAddress absenteeismDesignated a staff leader (non-physician led) trained in the BIPAI Malawi Teen Club curriculum and for mentorship by BIPAI team

3 younger teens doing an art activity during Teen Club group time; activities are separated by age (young vs. older teens)Baylor College of Medicine-BIPAI Teen Club Malawi Reference Materials, 2012 Perhaps the most well developed and resourced Teen Club intervention in resource limited settings is the Baylor Pediatric AIDS Initiative Center of Excellence Model. In Malawi, the Baylor program has been running an adolescent clinic in the capital city of Lilongwe since 2003 and Baylor has developed multiple centers of excellence throughout southern Africa. In 2010, there was interest by the Malawi National AIDS Commission and various NGO partners to see if this model was scaleable to Ministry of Health public sector tertiary referral centers with high pediatric and adolescent populations.

The Tisungane Clinic at ZCH adapted this model for adolescents patients to receive their medications and routine clinic visits on a Saturday. Saturday was chosen to address school absenteeism as well as school peer stigma. The designated space for the teen club is an open area behind the outpatient clinic that was hidden away from the main area of the hospital. 6 Teens are separated into smaller groups based on ageEvery teen attends the adherence activityDuring crafts, sports, they are pulled aside to be seen by clinicians to collect their medications

Intervention: ProcessThe First Tisungane Teen Club (March 2010); older teens making mobiles as an arts project; the gentleman on the right was making it for his girlfriendThe structure of each Teen Club typically begins with a large group welcome session where Teen sign in with leaders and they go over the rules of confidentiality and then begin group activities.

Large group activities may involve games, sports, dance or media. Small groups are then separated by age (older vs. younger teens).

During small groups, teens who have to collect their medications are seen by the clinic team as per a routine clinic visit. Although the clinic itself is offered monthly, some adolescents collect their medications every 2 to 3 months.

The clinic ends with positive social space activities again and typically disperses at lunch time.

Intervention: CurriculaTeen2Teen Peer Support in a Positive Social Space: the normalization of the HIV+ teen experience through games, sports, art, music, dance, social mediaPositive living and life skills training curricula: addresses rights, support systems, conflict resolution, disclosure and effective communicationAdherence sessions and treatment preparedness: Use of role play, discussion, games, group problem solving and strategizingSexual and Reproductive Health: puberty, relationships, romantic relationships, SRH basics, positive prevention

Curriculum sessions in the small groups include life skills, adherence, treatment preparedness, or SRH are conducted by nurses, lay health worker staff and expert patients.

The programming is implemented entirely by non-physician Malawian staff, 70% of whom work for the Malawi Ministry of Health.

8Intervention: EligibilityHIV+ adolescents HIV status disclosed and acceptedShould be on ART

Making bracelets during group timeEligibility criteria to join teen club includes: one) Must be an HIV+ adolescents who were seen at ZCH. Two) they must have had their status disclosed to them and accepted.And three) they must be on ART.9Overall Objective and Study AimTo determine the retention in care, and treatment outcomes of adolescents who attend Teen Club and adolescents who do not attend Teen Club

Positive space for positive peer interactions: sports and music equipment provided for peer groups to break off for socialization during opening large group activitiesAs part of the evaluation of Teen club, we wanted to assess if attendance at Teen Club improved the retention rates of adolescents on ART.

10MethodsA retrospective cohort study comparing baseline demographics and outcomes of adolescents attending teen club vs. those that did notMoH ART registers and master-cards were reviewed from clinic inception to end of data collection (October 2004 until June 2012)Teen Club was implemented April 2010Data was extracted from electronic medical records for all patientsWe assessed demographic and clinical characteristics of adolescents attending teen club vs. those that did not.

MoH ART registers and master-cards were reviewed from clinic inception to end of data collection (October 2004 until June 2012). Teen Club was implemented in April 2010. The data was extracted from electronic medical records for all patients during the period. 11Exposure: Participation in Teen club

Outcome: Retention on ART treatment Loss to follow up = missed 2 or more clinic visits i.e. >60 days from expected date of follow up

Covariates of interest: Age, sex, distance from hospital, reason for initiation, change in clinical status

Analysis: Multivariate models using Kaplan Meier survival rates & Cox proportional hazard ratiosMethodsWe limited the analysis to only patients who had at least 2 ART visits, thereby reducing some of the early loss to follow up. Teen club patients were defined as those who had 2 recorded consecutive Saturday visits. Loss to follow up was defined as missing at least 2 clinic visits. If teens stopped and restarted within a year, they were only considered loss to follow up if they had a second period of non-adherence.

We also looked at age at initiation of ART, sex, location based on the nearest health facility (Zomba Central Hospital is located in an urban area). We measured change in immunological status by percentage of weight change from the start of ART to the end of data collection.

To assess retention comparing teen club patients and non-teen club patients, we used Kaplan Meier survival estimates and cox proportional hazard ratios in a multivariate analysis adjusting for potential confounders. 12

Demographics of Teen Club adolescents versus non-Teen Club adolescentsTeen club clients differed significantly from other teens.

Age we found that the age of our teen club participants ranged from 9-23 years so in the analysis we included all patients at ZCH aged 9-23. We can see that overall, teen club patients are much younger.Sex Almost half of teen club patients are girls as compared to the 25% in the rest of the teen population.Location 78% of the teens attending teen club lived in proximity to Zomba Central Hospital.Clinical status at ART initiation did not differ much between groups but it is interesting to note that teens in teen club had better records as compared to other teens.Keeping in mind that these are adolescents, we also looked at percentage of weight change from ART initiation to the end of data collection period. There was a dramatic increase in weight among the teens that attended teen club.

13Number of clients starting Teen Club by time from initiation of ART to first Teen Club visitHere you can see that out of 192 teens, 43% started between 2-4 years after ART initiation (Median 1146 days (~3 years)) meaning they were at least adherent for about 3 years prior to joining teen club.

We adjusted for this in our analysis. For patients who did not join teen club, their time to first visit was their complete follow up time.14

Retention on ART (up to 6 years after ART initiation)Log rank test: 2 = 133.7 (p value