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Evaluation of a specialized psychosocial support intervention “Teen Club” in improving retention among adolescents on antiretroviral treatment (ART) at.

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1 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 Prevention July 2013, Kuala Lumpur, Malaysia 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. 1 Dignitas International, Zomba, Malawi 2 Columbia University Mailman School of Public Health, Department of Epidemiology, New York, United States 3 Dalla Lana School of Public Health, University of Toronto, Canada 4 Div. of Infectious Diseases, Dept. of Medicine, U. of Toronto, Canada

2 Disclosure/Conflicts of Interest
The authors of the paper declare no bias or conflict of interest All photos used with permission Skip past quickly

3 Global Context: HIV+ Adolescents
4.9 million young people (15-24) living with HIV 2011 75% in sub-Saharan Africa Young people account for 40% of new infections in adults (>15+) Challenges for HIV+ Adolescents Changing physiological and psychological maturity Developing sexual identity Managing livelihood security in addition to health Stigmatizing 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. UNAIDS 2012

4 Malawi Context: HIV+ Adolescents
Community Health Workers doing health promotion at a secondary school in Zomba District, SE Zone, Malawi LILONGWE NATIONAL ART PROGRAM Began in 2004 HIV seroprevalence currently 12% Over 500,000 ever initiated on ART Population: 15 million ZOMBA CENTRAL HOSPITAL Referral hospital for SE Zone (population 3.1 million) 20,000 initiated on ART (10% pediatric) National roll out of ART in Malawi began in 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).

5 Malawi Context: LTFU from ART at Tisungane Clinic
The highest risk age group for LTFU were young adults between the ages of 15-24 About 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 ( ) 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. Chan AK et al, Trop Med Int Health (s1):1-8

6 Intervention: Teen Club
A streamlined adaptation of the Baylor Malawi Teen Club Model for a Ministry of Health run clinic Conducted every 4 weeks on a Saturday Address absenteeism Designated 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) 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. Baylor College of Medicine-BIPAI Teen Club Malawi Reference Materials, 2012

7 Intervention: Process
Teens are separated into smaller groups based on age Every teen attends the adherence activity During crafts, sports, they are pulled aside to be seen by clinicians to collect their medications The 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. The First Tisungane Teen Club (March 2010); older teens making mobiles as an arts project; the gentleman on the right was making it for his girlfriend

8 Intervention: Curricula
Teen2Teen Peer Support in a Positive Social Space: the normalization of the HIV+ teen experience through games, sports, art, music, dance, social media Positive living and life skills training curricula: addresses rights, support systems, conflict resolution, disclosure and effective communication Adherence sessions and treatment preparedness: Use of role play, discussion, games, group problem solving and strategizing Sexual 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.

9 Intervention: Eligibility
HIV+ adolescents HIV status disclosed and accepted Should be on ART Eligibility 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. Making bracelets during group time

10 Overall Objective and Study Aim
To determine the retention in care, and treatment outcomes of adolescents who attend Teen Club and adolescents who do not attend Teen Club As part of the evaluation of Teen club, we wanted to assess if attendance at Teen Club improved the retention rates of adolescents on ART. Positive space for positive peer interactions: sports and music equipment provided for peer groups to break off for socialization during opening large group activities

11 Methods A retrospective cohort study comparing baseline demographics and outcomes 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 April 2010 Data was extracted from electronic medical records for all patients We 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 The data was extracted from electronic medical records for all patients during the period.

12 Methods Exposure: 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 ratios We 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.

13 Demographics of Teen Club adolescents versus non-Teen Club adolescents
Teen 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 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.

14 Number of clients starting Teen Club by time from initiation of ART to first Teen Club visit
Here 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.

15 Retention on ART (up to 6 years after ART initiation)
From the KM survival estimates, we can see that there is a difference in initial retention in teen club versus non-teen club patients. However, if we look at the graph around where most teens are joining teen club after ART initiation, participation in teen club does seem to slow down attrition rates. Log rank test: Χ2 = (p value <0.001)

16 Hazard ratios of LTFU comparing non-teen club vs. teen club adolescents
*Adjusted for age, sex, urban/rural, days on ART before first Teen Club visit, weight change From the multivariate model results, we can see that patients not attending teen club had a 3.07 higher risk of being lost to follow up compared to teens that attended teen club. We adjusted for the potential confounders of age, sex, location, time on ART before first teen club visit and weight change.

17 Limitations Self-selection of adolescents into teen club
Lack of data on number of referrals to Teen Club and reasons for not joining Use of programmatic data not intended for research purposes Cross-sectional study design I should mention that our results should be taken into account with certain limitation. One: The majority of patients joining teen club chose to participate and had already passed a certain amount of time on ART in which they had perfect retention. Two: We do not have data on the number of patients referred to teen club by clinicians and therefore do not know reasons for not joining teen club. Three: We used programmatic data which was not intended for research purposes. We also lacked complete immuno-status information such as CD4 count and pill count to measure adherence. And lastly, this data was based on a cross-sectional design which limits our ability to assign causality of teen club to better treatment outcomes.

18 Conclusions & Future Direction
Teen club is an effective method in improving retention among adolescents National AIDS Commission planning to support Dignitas and Baylor COM Children’s Foundation Malawi to expand Teen Clinic to all district hospitals (secondary referral centers) in the South East Zone Despite these limitations, Teen club is an effective method in improving retention among adolescents. In light of these results, Dignitas plans to expand teen club to 3 additional district hospitals. Tisungane Teen Club Small Group Sessions on Nutrition and Food Choices

19 Acknowledgements This ZCH Teen Club is funded by USAID-Malawi and Dignitas International M. Agarwal was funded as a Global Health Corps Fellow Tisungane Clinic, Staff and Patients Edson Mwinjiwa, Chrissie Gondwe, Edith Thaulo, Harriet Akello, Yusuf Bhamu, Harvey Mafuta, Beatrice Malonje, Lucy Banda, Joseph Kaphuka, Alice Kadzanja, Brave Nyirenda Baylor College of Medicine Children’s Center of Excellence Malawi Dr. Peter Kazembe Linda Malilo, Symon Mtambo BIPAI PAC Malawi Physicians: Chris Buck, Kevin Clarke, Carrie Cox, Carrie Golitko, Michele Kautzman, Janell Routh Dignitas International Data: Alfred Matengeni, Jean Bourgeois Research: Monique van Lettow, Joshua Berman Medical Programs: Teferi Beyene, Belete Assefa, Adrienne K. Chan I’d like to acknowledge USAID, Global Health Corps, the Baylor College of Medicine Malawi team, in particular the Pediatric AIDS Corps physicians in who helped with clinic inception, and finally the Tisungane Clinic Team and Teens

20 Questions? Thank you. Tisungane Clinic Staff and Expert Patients

21 As an aside, I would like to add that the definition used for a teen club patient is different from what we presented in our abstract, where patients were identified as having been in Teen Club based on their files having been marked and separated in a clinical room filing cabinet. This revised definition takes into account patients who attended Teen Club (based on an electronic medical record) whose files were not physically separated. As such, the results presented here differ but we believe represent a more accurate picture of teen club. Extra Slides

22 Maintaining Confidentiality
Rules of attending teen club: a) no photos, camera-phones or videos at any Teen Club meeting; b) no talking to others about friends you meet at Teen Club (this includes teens, staff, volunteers - anyone at teen club); c) visitors, volunteers and clinic staff should wait for teens to greet them in the community (so as not to inadvertently “out” a teen as being positive); and d) no discussing Teen Club members with your family and friends. Probably the biggest risk is related to inadvertent disclosure of status in attending Teen Club, as often other adolescents who are not HIV+ are interested in joining the activities. Confidentiality is critical to a successful Teen Club, so supervisors carefully monitor participation. Teen Club leadership provides a safe environment for teens to learn and to share. They ensure the maintenance of confidentiality through the establishment and enforcement of rules including: a) no photos, camera-phones or videos at any Teen Club meeting; b) no talking to others about friends you meet at Teen Club (this includes teens, staff, volunteers - anyone at teen club); c) visitors, volunteers and clinic staff should wait for teens to greet them in the community (so as not to inadvertently “out” a teen as being positive); and d) no discussing Teen Club members with your family and friends. In practice again, this has been challenging to enforce.

23 Timeline of Entry into Teen Club
Start of teen club ART initiation This timeline shows the various trajectories of entry into teen club among our analysis. Of concern was the potential bias that teen club participants differ in retention generally than non-teen club participants. *click* Most participants had initiated ART prior to the start of teen club and were fully active until the end of the data collection period. *click* Other teens initiated ART after teen club implementation and chose to start teen club. *click* And other teens may have started teen club on the day of starting ART.

24 Explanations of younger age in Teen Club
I think the younger teens have a higher rate of being recruited as most of them are in primary school and residing with their parents within Zomba (access) than older teens who are mostly in boarding schools and may be outside Zomba and may not afford monthly or two monthly clinics to Zomba. This also makes older teens less likely to be retained in care after recruitment.   it's also selection bias since older boy teens are the most likely to default Disclosing earlier - they are giving feedback to parents to disclose earlier older teens might have other responsibilities - maybe even school on weekends Why more girls? It would be interesting to know the median ages for both groups. But my thought is that older girl teens are more likely to drop out of care or not be enrolled into teen clinic due to recruitment into secondary education which may take them outside Zomba (access issues). We have had a few cases of order teens dropping out of teen clinic due to teen-age pregnancy or marriages- another important reason for dropping out of teen clinic. I would therefore expect more order teen girls in the non-teen club population. 

25 Literature to support Teen Club
Regular follow up with a known medical provider improves adherence Peer support intervention (bi-weekly meetings and pill boxes to record medication) In a review article of twenty-one research studies measuring HIV medication adherence and interventions to address adherence among adolescents aged years, overall rates of adherence ranged from 28.3% to 69.8% before the interventions started [6]. Firstly, 72% of adolescents reporting non-adherence showed that housing instability was the most statistically significant correlate of poor adherence [7]. Not surprisingly, school attendance was associated with good adherence [8]. Perhaps the strongest predictor of non-adherence is the medication regimen itself, with several studies looking at length of time on ART and the complexity of the regimen, finding that the number of pills and frequency of dosing were significantly correlated with non-adherence [9]. This is particularly relevant in Malawi, where many older adolescents are switched to second line regimens due to HIV resistance and rising viral loads. These second line regimens are extremely challenging, with a higher pill burden and more side effects. Finally, social pressures are a major contributor to non-adherence, with one report commenting that 50% of youth skipped medication doses because of fears of discovery by family or peers [10], and another demonstrating that psychological distress and a lack of perceived self-efficacy strongly correlated with non-adherence. Although the information from this review has primarily come from HIV+ teens, followed by academic centres in the global north, similar risk factors for non-adherence are found in the target population in Malawi, with the basic psychology of puberty and physical maturity remaining constant between cultures. Moreover, recent publications from large cohorts in Kampala [11] and Cape Town [12] demonstrate lower rates of virological suppression and increased risks of virological failure in adolescents as compared to adults. The literature is lacking in data to support provider factors in adherence. A study published in 2006 shows that regular follow-up with a known medical provider resulted in improved adherence [6]. In addition, in an interventional study of a peer support group, 91% of participants reported increased medication adherence after bi-weekly group meetings and introduction of devices such as pillboxes to record medications. This points to a need for multi-component interventions in improving adherence [6]. Teen Club is a strategy that combines many techniques into a recurrent monthly event that keeps teens focused on their health and wellbeing. Data from Teen Clubs in Botswana, comparing teens on ART who attend Teen Club vs. teens who do not, demonstrated a trend towards a decreased use of second line ART at older ages, with a mean monthly adherence rate of >97%. This grant will provide the opportunity to continue to build capacity throughout Malawi by supporting a sustainable expansion of the Teen Club model in the SEZ through the DHMTs.

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