Community-based support aids retention, adherence and treatment response

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Patient retention and linkage throughout the cascade of HIV care remains very low, placing the concept of ‘test and treat’ as part of the solution to ending the AIDS epidemic in question, but community-based support can play an important role in improving retention in care, the 19th International AIDS Conference (AIDS 2012) in Washington DC heard this week.

Dr Matthew Fox of the Center for Global Health and Development at Boston University noted that systematic review shows that the median retention of patients prior to starting antiretroviral (ARV) treatment in sub-Saharan Africa is only 29%. From HIV-positive diagnosis to CD4 results being obtained, only 59% remain in care, while only 46% of patients remain in care from this point until reaching eligibility for ARVs. Once patients are declared eligible for ARVs, only 68% reach the point of ARV initiation. On average, only between 60 to 70% of patients remain on ARVs for two years after initiation.

Dr Rachel Baggaley of the World Health Organisation (WHO) presented findings of an electronic survey of more than twenty countries to determine the main reasons for patients being lost along the 'cascade' of HIV care. The survey found that people were unlikely to access HIV testing due to a lack of perceived benefits, stigma, discrimination, fear and denial. From the point of positive diagnosis to enrolment in care, patients were lost mostly due to stigma, denial of positive status, poor links and referrals from testing sites to health services, or due to poor post-test counselling.


loss to follow up

In a research study, participants who drop out before the end of the study. In routine clinical care, patients who do not attend medical appointments and who cannot be contacted.

retention in care

A patient’s regular and ongoing engagement with medical care at a health care facility. 

community setting

In the language of healthcare, something that happens in a “community setting” or in “the community” occurs outside of a hospital.

multivariable analysis

Statistical technique often used to reduce the impact of confounding factors, in order to attempt to identify the real association between a factor of interest and an outcome. 

virological suppression

Halting of the function or replication of a virus. In HIV, optimal viral suppression is measured as the reduction of viral load (HIV RNA) to undetectable levels and is the goal of antiretroviral therapy.

Once enrolled in care, patients were likely to be lost due to delays in receiving CD4 results, or due to lack of CD4 testing, crowded clinics or far distances to clinics. Once patients are determined to be eligible for ARV initiation, they are often lost in care due to fear of ARV side-effects or disbelief in the effectiveness of ARVs, or due to drug stock-outs. For those patients on ARV treatment, the main causes for leaving care were found to be due to the high pill burden, high number of appointments and transportation costs and time burden, or patients stopping ARVs because they feel better.

Dr Florian Scheibe of the Institute of Public Health, Heidelberg University, Germany, showed high rates of loss to follow up during the first year of pre-ARV care at four rural health centres in Inganga district in Uganda. In this study, 81% (1634 of 2024) of the pre-ARV patients were lost-to-follow-up. More than 93% of those patients who dropped out of care did so after their first visit to the clinic. This retrospective cohort analysis reviewed pharmacy registers of all HIV-care-enrolled patients from February 2005 to August 2009. In all, 26% (521 of 2024) of the pre-ARV patient files were missing.

Community-based adherence support improves retention

Adults receiving community-based adherence support were significantly less likely to be lost to follow-up and had lower mortality and improved virological suppression after starting ARVs, according to a prospective cohort study that compared patients receiving community-based adherence support to those not receiving community-based adherence support from ARV initiation.

Clinic-based, community-outreach adherence-support healthcare workers called 'patient advocates' were introduced in 2004 by Kheth’Impilo, a South African NGO that supports district scale-up of ARV treatment in 142 public-sector health sites. The patient advocates ensure ongoing adherence, counselling and psycho-social support at the community level and support community services to ensure the continuum of care.

Six per cent (1185 of 19,668) of the patients who received community-based adherence support were lost to follow up, compared to 9.5% (4498 of 47,285) in those who did not receive support (p< 0.0001): Virological suppression at six months was also higher in the group receiving support at 76.6% (95% CI: 75.8%-77.5%), compared to 72% (95% CI: 71.3%-72.5%) in those who did not receive support (p< 0.0001). Only 4.9% of the supported patients died, compared to 6.3% of those who were not supported (p< 0.0001).

Active tracing of children on ARVs increases retention

Loss-to-follow-up of children on ARVs was 11.8% at 6 months and 16.8% at 12 months in two large public clinics in Lilongwe, Malawi, between April 2006 and December 2010. According to the multivariable analysis, risk factors for loss-to-follow-up were wasting (aHR 1.6, 95% CI 1.17-2.18) or being less than two years old at ARV initiation (aHR 1.55, 95% CI 1.02 – 2.37). Gender, distance to clinic or advanced WHO stage were not found to be statistically significant risk factors.

Active tracing of children on ARVs lost to follow-up was established in July 2006. A list of children who had missed an appointment by at least three weeks was generated each month and were traced up to three times by phone or home visit. Of these, 78% of the children were successfully traced and retained in care. After tracing, the lost-to-follow-up rate reduced by 62% from 22.7 to 8.5%, and mortality estimates increased from 2.6 to 4.8%.

The WHO survey recommended the use of ‘accompaniers’ (lay health workers) to assist in the tracing of patients from one point in the care cascade to another. In addition, it was recommended that a minimum package of pre-ARV care and prevention services is required to provide effective interventions and retain people at this stage, where most people are lost because no service is being provided to them. The survey also recommended point of care CD4 counts and telephone SMS return of results. Increased decentralisation and integration of ARV rollout with other health services, decreased number of visits and increased task-shifting and peer support would also increase ARV retention according to the WHO survey.


Fox M An introduction to the cascade of care. 19th International Conference on AIDS, abstract WEAE0201, Washington, DC, July 2012.

Ardura Garcia C et al. Risk factors and true outcomes of children lost to follow-up from antiretroviral therapy in Lilongwe, Malawi. 19th International Conference on AIDS, abstract WEAE0203, Washington, DC, July 2012.

Fatti G et al. Community-based adherence support associated with improved virological suppression in adults receiving antiretroviral treatment: five-year outcomes from a multicentre cohort study in South Africa. 19th International Conference on AIDS, abstract WEAE0204, Washington, DC, July 2012.

Scheibe F et al. High rates of loss to follow-up during first year of pre-antiretroviral therapy for HIV at primary health care level in rural Uganda. 19th International Conference on AIDS, abstract WEAE0206, Washington, DC, July 2012.

Baggaley R et al. Improving retention at all points in the HIV care cascade: the WHO perspective. 19th International Conference on AIDS, abstract WEAE0207, Washington, DC, July 2012.

View information on the session, including links to the abstracts and slides from the presentations, on the conference website.