Using concept mapping to explore why patients become lost to follow up from an antiretroviral therapy program in the Zomba District of Malawi

Globally, 34 million people were living with HIV/AIDS by December 2010 and the majority resided in sub-Saharan Africa [1]. In Malawi, the prevalence of HIV is estimated as 11% [2, 3] and over 650,000 children have been orphaned by AIDS [4]. By June 2010, approximately 58% of those in need were receiving antiretroviral therapy (ART) [5] although disparities continue to exist in access to treatment options, particularly for individuals living in rural areas [6].

Losses to follow-up (LTFU) from antiretroviral therapy is a major cause of patient attrition [7]. LTFU can be considered a catch-all category for patients who miss scheduled appointments or medication pick-ups (over a period of time) although operational definitions vary [8]. In Malawi, the term ‘LTFU from ART’ refers to a patient who is overdue for their appointment and is not known to have stopped ART, died, or transferred to another facility [9]. Importantly, patients who discontinue treatment are vulnerable to drug resistance, AIDS-related illnesses, and death [7, 8, 10‐12].

While various reasons are known, demonstrating associations between various variables and risk of becoming LTFU remains challenging. Reported reasons for LTFU in Malawi and elsewhere have included: food insecurity [13‐15], financial constraints [14, 16, 17], religious and family influences [14, 16, 18, 19], wanting to access traditional medicine [20], stigma and fear of disclosure of HIV status [10, 19‐22], living far from clinics and transport-related costs [10, 14, 18, 20, 23], and poor patient-provider relationships [10, 14, 20]. Treatment literacy (e.g., understanding the natural course of treatment and the need for adherence to ART) [24, 25], experiencing an improvement in health and believing that treatment is no longer necessary [10] may also matter. Some of these are consistent with the findings of our 2011 systematic review exploring livelihood factors and ART adherence [25] although we were limited by the available literature and could not identify new factors that may be relevant or specific to Malawi. Furthermore, our understanding of how these various factors potentially interact to influence whether a patient becomes LTFU over time, remains rudimentary [21].

Zomba is one of Malawi’s most populated districts (population: 670,500) and is predominantly rural [26]. Within Zomba, HIV prevalence is 14.5% although estimates have varied by location and population group, ranging from 12% in an urban centre to >30% at a rural hospital [27, 28]. In collaboration with the Malawi Ministry of Health, Dignitas International (DI), a humanitarian non-governmental organization, has delivered comprehensive HIV/AIDS care in Zomba since 2004, enrolling over 20,000 patients on ART. The decentralization of services to rural areas has led to a rapid increase in the number of people accessing ART in the district.

In order to improve patient retention in DI’s ART program, we sought to comprehensively identify factors that influence why patients become LTFU as well as factors that impede successful tracing efforts.

Concept Mapping (CM) is a participatory mixed-methods approach that enables diverse groups of stakeholders to share their ideas, representing them in various quantitatively derived visual concept maps [29, 30]. CM has three phases: brainstorming of statements in response to a focus prompt; sorting and rating of the consolidated list of brainstormed statements; and interpretation where participants discuss and interpret the maps identifying priority areas for action. The use of CM in this context was advantageous as our aim was to identify the most important and feasible interventions/strategies that address patient retention [31].

In the present study, we used CM to incorporate both patient and provider perspectives to comprehensively and systematically identify important and feasible issues to address with respect to why patients on ART become LTFU over time. The final 9 cluster concept map consisted of both patient- and healthcare-related clusters. The findings of the present study can inform the development of strategies that work to prevent patients from becoming LTFU including improved tracing efforts.

Poor Documentation and Resources Needed for Effective Tracing were rated important and feasible clusters to address. Importantly, the quality and accuracy of data (including data on patients who become LTFU) can vary across large longitudinal cohort studies [34, 35]. While reliable ART monitoring is critical for measuring patient outcomes and program performance [35, 36], data management can be particularly challenging in resource-poor settings [34, 35, 37‐39]. This has been attributed to poor infrastructure, a lack of trained personnel, and clinic characteristics including patient volume [35, 38]. Often front line health workers involved in data collection lack a clear understanding as to how the data they collect will be used and how particularly, it is relevant for their day-to-day activities [34, 40]. Improving quality data collection, however, may require incentives and ongoing training and supervision for personnel [35, 38, 40], specifically because data collection can be burdensome [35, 37]. Programs with electronic monitoring systems have demonstrated better quality data [35, 36] and it is worth noting that DI has improved their electronic system since 2007 although challenges remain. Indeed, ART providers in our study spoke to limited storage space as one reason why files become misplaced and/or lost. Importantly, our findings suggest that while there are patients who truly become LTFU, poor documentation may lead some patients to be incorrectly labelled as LTFU (e.g., the files were lost, visit was not recorded). For example, missing patients may have also transferred to another clinic and therefore may only be LTFU from the perspective of their original clinic [35]. Therefore, identifying where (e.g., which clinics) and when (e.g., data entry, filing) errors occur is a necessary first step in order to determine how it can be addressed although enhanced documentation, improved coordination between clinics (when there are transfers), and effective tracing of missing patients are all necessary components [7, 41].

Tracing clusters were identified as important and feasible to address in the present study. Participants noted that, based on current definitions and guidelines, tracing may be initiated too late in Malawi. Some studies have suggested that patient retention can be improved when tracing is initiated as soon as possible (dependent on available resources) as this can minimize the likelihood that patients remain LTFU [17, 42]. Prioritizing who gets traced and when could mean that fewer patients need to be traced as many patients may ultimately return on their own. Prioritization can be determined through the identification of particular clinical markers that are associated with an increased likelihood of becoming lost or an increased risk of death. In Malawi, for example, risk of death is highest in patients who have recently initiated ART. This suggests that time on ART may be an important way to prioritize patients for tracing [41].

Drawing from the experiences of TB programs, tracers specific to ART could be trained [43] although important differences in the management and perceptions of HIV are important considerations. For example, the largely sexual transmission and labelling of HIV as a ‘moral disease’ makes anonymity and confidentiality of those living with HIV extremely important [22]. Home visits by HSAs may lead to involuntary disclosure of their HIV status [21]. These factors have important implications for how ART tracing efforts should be implemented although as participants in the present study, as well as elsewhere [35, 41] have noted, accurate contact information is needed to ensure that patients can actually be found. While the number of patients with cell phones is growing (by 2008, approximately 15% of Malawians were reportedly using cell phones), many patients, particularly those in remote settings, continue to be without working phones [44]. Importantly, while a working phone number is one of the strongest predictors of successfully finding patients [41, 45] many still do not return to care [40, 42, 46, 47]. With enhanced training on ART counselling, HSAs may be better equipped to encourage the patients they trace to return to care. Currently, many struggle with questions from patients related to the need for adherence and/or management of side effects.

Participants rated Social and Financial Support Issues high on importance. Poor health and feeling sick have been previously associated with stopping ART and/or an increased risk of becoming LTFU [10, 48, 49]. During interpretation, participants determined that HSAs and guardians can help support patients who are unwell by bringing ART to patients in their homes when they are too sick to travel [50]. The identification of the potentially important role of guardians was, to our knowledge, a finding unique to our study. Disclosure of one’s HIV status has been recognized as a double-edged sword [51] - having the potential to yield needed social support but that may also result in stigmatization and abandonment [51‐53]. Through participation in support groups, patients have a safe place to share experiences and support one another which can also strongly motivate patients to adhere to ART [22].

Findings around transport-related costs are consistent with previous studies [10, 14, 17, 18, 20]. Patients often have to choose between using their limited income on transport or food for themselves/families [54]. Indeed food insecurity and the perception that ART needs to be taken with food have been shown to influence whether patients can make it to their visits and keep taking their meds [13‐15, 55, 56]. While providing food supplements at the clinics may encourage patients to remain in care [15], this may also deter others, particularly when individuals do not want to be associated with ART. Future research is needed to identify strategies that improve patient retention while supporting patients with logistical challenges that may place them at increased risk for becoming LTFU.

A brief discussion on Health Worker Attitudes and Stigma and Fears is warranted given rating values. It is worth noting that these clusters included both patient- and healthcare- related statements. Within Health Worker Attitudes for example, statements largely speak to patient frustrations with the healthcare they receive particularly around the use of exposing language [21]. Stigma has been previously associated with patients stopping treatment in Malawi [10]. While taking ART can provide patients with a renewed sense of life, allowing them to get back to work and take care of their families, stigma continues to play a powerful role [22]. Experiences of HIV-related stigma can not only affect adherence to ART but may also impact on social aspirations and trajectories linked to a positive identity [21]. While we were surprised that Stigma and Fears was not rated higher, participants in the present study may view stigma as an underlying issue rather than a more immediate cause of why patients become LTFU. For example, a patient may seek care further from his/her home for fear of stigmatization, resulting in having a farther distance to travel, thereby increasing transport costs. The latter issue may be seen to be the more immediate issue and as a result, given a higher rating value. In fact, in a recent study, transport costs and other logistical barriers were more commonly reported reasons for why patients become lost when compared to stigma [49]. Healthcare delivery models that acknowledge patient fears related to stigmatization and isolation are critical as these can undermine relationships that are essential for survival [57, 58].

There were several limitations in our study. Firstly, while we attempted to include the perspectives of several stakeholder groups, numerous potentially relevant stakeholders with important perspectives may not have been adequately represented including family members of ART patients and religious leaders. Excluding participants without a secondary school education from sorting activities may have biased our final cluster map towards a more highly educated population although it is worth noting that a secondary school education was not required for the other study phases. While sampling was purposive, due in part to feasibility issues, more providers than patients participated in sorting and rating which may further bias our findings more towards a provider perspective. Participant fatigue/sorting burden may have been particularly important during sorting although we attempted to limit the number of statements to be sorted. Rating may have also been impacted by participant fatigue which may help to explain the small range of rating values. Social desirability bias may be present in interpretation activities where participants were asked to interpret results in which many applied to shortfalls in healthcare although participants were informed at the start of the study that all perspectives were valuable. Individuals who chose to volunteer and participate in this study may have been fundamentally different from those who declined to participate, particularly if they have had poor experiences in the past with researchers or their service providers in general. Related to this is the recruitment of patients who were already LTFU. Those that were reachable by phone or in person and agreed to participate may be different from those we could not find. Regardless, differences in participation across individuals we attempted to recruit may impact on the generalizability of our findings to the broader population of interest (e.g., ART patients in Zomba). Finally, while our findings may not be generalizable to individuals outside of Malawi, the concept map presented here identified linkages between various factors that influence losses to follow-up and therefore, may be of interest to ART managers and providers internationally.

Through the incorporation of patient (including those who were LTFU), provider, and decision-maker perspectives, we determined that individuals can become LTFU for a multitude of patient- and healthcare-related reasons. In general, nine major themes related to why individuals become LTFU emerged and were identified. Poor documentation and issues related to tracing were identified as being particularly important in our context. CM offered a unique approach that combined the strengths of qualitative methodologies of data collection with quantitative methods of analysis to further our understanding of LTFU in ART programs in the Malawian setting. Both patient and provider perspectives were brought to the forefront, and offered insight into potential priority areas for action. Findings of the present study have implications for strategies that maximize patient retention in ART programs including improved documentation of patient visits, enhanced coordination between clinics involved in transfers, and more comprehensive counselling for patients.