HIV Self-help groups may increase retention in care in Mozambique Sabrina Pestilli, Jara Llenas-García, Erling Larsson, Michael Hobbins, Jochen Ehmer, Philip Wikman. IAS 2013 I am very pleased to present data from self help groups of HIV pts in Chiure, Mozambique In this study we aimed to evaluate the SHG strategy

Background Loss to follow-up is the most common cause of attrition (56%)¹ Logistical challenges cause defaulting from ART ² : distance to services transport cost work and family responsibilities Barriers at the health centre lead to defaulting from care³: long waiting time lack of support and information poor quality of the health services  Self help groups of HIV patients appear to increase retention in care while decreasing financial/logistic/social barriers to care 4 A systematic review of ART programs in Sub-Sahara Africa reports that retention in care after 2y is about 60% (with ¼ and ¾ of pts not in caree after) and LTF is responsible for 56% of attrition (the most common cause of attrition ) followed by death. Some of the reasonsfor defaulting form ART are practical challenges that pts face such as distance to the HV, transport cost, work and family commitements. In addition ,there are the barriers that pts encounter in the HC with, ART Programms are now trying to address these challenges with out-of-clinic approaches.In 2009 MSF introduced SHG of HIV pts in Tete province in Mozambique. The strategy showed to decrease the finalcial and social costs of ART treatment improving retention to care. ¹ Fox et al. Trop Med Int Health 2010; ² Geng et al JAIDS 1999;³ Miller at al Trop Med Int Health 2010; 4 Decroo et al JAIDS 2011

Objectives To evaluate the feasibility of Self-Help Groups (SHG) of HIV+ people in a secluded area of Northern Mozambique To evaluate the retention into care of HIV+ people in SHG vs. HIV+ people not in SHG In this study we intended to evaluate the feasibility of this strategy in a rural area in Northern Moz And to compare the retention into care of SHG pts compared to non SHG pts

Context Chiure district, Cabo Delgado ~ 250,000 inhabitants 11 Health Centres 1 health staff/ 5,812 people 3 health centres providing ART, 2 of them initiating ART Chiure The study was condcucted in Chiure district in Cabo Delgado province in Northern Mozambique. The district has a population of 250...11 HC, 1 health staff for 5,812 people. SolidarMed, a Swiss NGO has been supporting the health authorities in implementing HIV care and treatment since 2005 when the ART program started. Currently there are 3 HC providing ART.

HIV in the Chiure District HIV prevalence: 4%¹ Estimated number of HIV+ individuals: 8,472 In need of ART: 3,122 Enrolled in ART: 1,242 pts Attrition rate 32% ² According to the latest data from the Direcao Provincial de Saude in Cabo Delgado the HIV prevalence in women attending ANC is 4% and in the district there is an estimation of 8,472 HIV+people with 3,122 people in need of ART. However the number of pts enrolled in ART at the end of 2012 was 1,242 and the attrition rate in the province in one of the highest nationwide with 32%. ¹ Provincial Health Directorate 2012 ² Provincial Health Directorate 2011

Health Centre Conditions Lack of health staff Distant Poor management «Quantity vs. Quality» WHO estimates that there is need at least of 4 health workers per 1,000 pts receiving ART. When we look at the ART programme in Mozambique we find an exception gap of health workforce. Pts face:long distances to reach the HC, lack of health staff, poor management of the health centres as well as the pts where health staff has to focus more on the quantity than on the quality of care.

Health Centre Conditions Lack of health staff Distant Poor management «Quantity vs. Quality» With HIV treatment experience HIV patients on treatment: Without signs of complications should not frequent the health centre every month to fetch pills Despite the overcrowded HC, most of the pts must to go every month to fetch their ART which becomes one of the main barriers to retention . We believed that SHG strategy could be a way forward for pts with experience in HiV treatment and no complications who are not need to go to the HC very often.

HIV Self Help Group A group of up to 6 members (HIV+ patients in treatment) with 1 focal point SHG members: 1. Rotationally collect ART drugs in HC and distribute to others 2. Monitor other members adherence/outcomes 3. Provide social support 4. Have a clinical consultation/CD4 every 6 months Focal point: 1. Coordinate with the HC 2. Monitor members adherence and health 3. Organize a SHG meeting once per month The SHG strategy offers an alternative solution to ART distribution in the HC but also give more responsibility to the pts in taking care for their own health Each group of HIV pts is constituted of 2-6 members with 1 focal point. The SHG memebrs have 4 main fucntions: Every month a different member goes to collect drugs in the HC for all the members and distribute them They help each other in being adherent and understand how to assume the drugs. 4. The rotation system ensures that each member has a clinical consultation The focal point is in charge to coordinate the group with the HV, monitor health and adherence of all the groups members and organize a monthly meeting

HIV Self Help Group Criteria to form SHG: 1. 2-6 pts living in the same community or geographic area 2. Patients ≥ 16 years 3. Pts stable on treatment ≥6 months 4. Pts clinically stable 5. CD4 count > 200 cell/ul 6. Pts in first line 7. Motivation to be in SHG There are same criteria to be fulfilled to form a SHG: 2-6 Pts from the same neighbourhood are selected by the health staff to form SHG.Pts have to be > 16

Potential benefits ¹: Risks: Time savings (patient and health staff) Money saving for pts (less trips to the health centres) Efficiency of health centre visit Stigma reduction Reduction of attrition Risks: Decreasing treatment quality and follow up Needs regular monitoring visits from health staff to ensure quality ¹ Decroo et al JAIDS 2011 Time savings for the pts who do not go to the HC every month but also for the H staff with a consequent improvement of the efficiency of the visits. Reduction of transport cost. Stigma reduction and all these factors can lead to reduction in attrition.

Method Participants: From March 2011 – December 2012:  27 groups with 140 pts Inclusion Criteria: ≥ 16 years of age On ART ≥6 months (a pre-requisite to be included in SHG). Method for Analysis Retrospective comparison of HIV+ patients on ART using same inclusion criteria for SHG and non-SHG group Fisher exact test for the categorical variables comparison Student-t-test or Mann-Whitney-U-test for the continuous variables comparison Time frame of the study is March 2011 when the SHG strategy was introduced as pilot in Chiure and the first SHG was formed - December 2012. The inclusion criteria for the study were age > 16yrs and being on treatmnet for > 6 motnhs ( some of the criteria necessary to be in SHG). We conducted a retrosp. an comparing HIV pts on ART with the same inclusion criteria for SHG and not SHG pts. For categorical variuable we used Fish While for the continuous varaibles we used Student t-test or Mann-Whitney-U-test

Results: Characteristics No SHG (n=778) SHG (n=140) RR; p-value Men (%) 322 (41.4%) 46 (32.9%) 0.79; 0.058 WHO stage at first visit (%) I 80(10.3%), II 91(11.7%), III 496(63.8%), IV 111(14.3%) I 6(4.3%), II 8(5.7%), III 97(69.3%), IV 29(29.7%) p<0.006 Pregnant (%) 46 (5.9%) 4 (2.9%) 0.47; 0.16 Age at entry (y) 35 ±10.3 35.7 ±10.2 0.51 BMI at first visit (kg/m2) 19.6±3 19.2 ±2.6 0.1 CD4 at first visit (cells/mm3) 192 (115-292) 197 (132-305) 0.37 Study participants were 918 (140 of them were part of a SHG) We evaluated different basic characteristics such as gender, age, WHO stage, BMI, CD4count. Women were more represented in SHG compared to men. WHO stage was more advanced in SHG members compared to non SHG. Gender imbalance between SHG and Non-SHG

Results: Outcome Outcome (death) is similar between groups No SHG (n=778) SHG (n=140) RR; p-value Death (%) 35 (4.5%) 6 (4.3%) 0.95; 0.91 LFU (%) 111 (14.3%) 2 (1.4%) 0.08; <0.0001 Time of follow-up (months) 21 (12-47) 45 (27-59) <0.0001 Outcome (death) is similar between groups Significantly less LTFU in the SHG Significantly less time of follow up during the same time period in the Non-SHG We compared the death outcome between the two groups that was similar while the LFU were significantly less in the SHG. At the same way, the FU time in the SHG was longer than in the SHG. FU median time in months since the start of follow-up till LTFU, death or end of study period (31/12/2012). The follow-up had to be at least 6 months in March 2011 for the pts t to be included in the study.

Conclusions SHG strategy was well accepted Exit rate from SHG is low 13.6% ( 2 LFU, 6 deaths, 8 pregnancy,1 TB, 1 in 2nd line,1 epilepsy) Retention in care appears improved, but Selection bias is likely to contribute to the seen effect Demand in the neighbouring communities increase! The piloted strategy has now been expanded to every district in Cabo Delgado province and nationwide. Our study demonstrated that the pilot strategy was well accepted, understood and embraced by HIV pts even in this rural communuity. The exit rate from the groups was low :2 peope were LFU and 6 died while other 11 people returned to standard care for medical reasons such us pregnancy, TB, epilepsy or starting 2° line, all conditions that are not compatible with the incusion criteria in SHG Retention in care seems improved but we need to be very cautious because a selection bias can contribute to this effect since SHG pts are selected amongst pts adherent for at least 6 months Surely we witnessed an increasing demand from nieghbouring and due to the increase demand And the piloted strategy has now been introduced in the whole province as well nationwide

Acknowledgements All patients and staff in Chiure Colleagues from SolidarMed Mozambique (J. Garcia, P. Wikman, E.Larsson) Colleagues from SolidarMed Lucerne (J. Ehmer, M. Hobbins)