CLINICAL outcomes and loss to follow-up among people living with HIV participating in the NAMWEZA intervention in Dar es Salaam, Tanzania: a prospective cohort study
© The Author(s) 2017
Received: 19 January 2017
Accepted: 17 March 2017
Published: 28 March 2017
Psychosocial factors have been linked with loss to follow-up (LTFU) and clinical outcomes among people living with HIV (PLH), however little is known about the effect of psychosocial support on LTFU among PLH in treatment and care. The purpose of this study was to explore the effect of NAMWEZA (“Yes, together we can”) friends’ psychosocial support intervention on clinical outcomes and LTFU among PLH. NAMWEZA is based on a novel program using “appreciative inquiry”, positive psychology approaches to empower, promote positive attitudes and foster hope.
PLH participating in the NAMWEZA intervention in HIV care clinics in Dar es Salaam Tanzania were compared with non-exposed PLH obtained from facilities that routinely collect clinical information and both followed longitudinally for 24 months. Baseline sociodemographic, clinical measures (CD4 cell count, hemoglobin (HGB), weight), and LTFU measures were collected. Chi square, Fisher’s exact tests, and t-tests were used to compare the frequencies for categorical variables and the means of continuous variables from the intervention and the comparison groups to identify variables that were significantly different across the two groups. Random effects models were performed to examine the bivariate associations between the intervention status and clinical outcomes.
At the end of 24 months of follow-up mean CD4 count and HGB levels increased significantly in both intervention and comparison groups (p = 0.009 and p < 0.0001, respectively). Weight increased significantly only in the intervention group (p = 0.003). Cumulative LTFU was three times higher in the comparison compared to the intervention (p < 0.001) group. Having a low CD4 count, extremes of weight, low HGB, younger age, and male gender were significantly associated with LTFU among the unexposed group, while being on ART for duration of 12 months or more was protective against LTFU in those intervened.
Among PLH on ART, exposed or not exposed to NAMWEZA intervention, clinical care outcomes improved over time. LTFU was much higher in the comparison group with factors commonly known to predict LTFU only apparent in the comparison group. NAMWEZA could be a promising peer-facilitated model to reduce LTFU among PLH in care that can be integrated in ART services; however, more research is needed to evaluate its longer term effects.
KeywordsPsychosocial NAMWEZA HIV/AIDS ART LTFU PLH Dar es Salaam Tanzania
Although there has been increased public and patients’ awareness of the benefits of antiretroviral therapy (ART) globally , in many countries attrition from ART care programs has been high, with loss to follow-up (LTFU) of patients listed as a leading cause [2–6]. However, ART can only be effective, resulting in virological suppression, if PLHs are highly adherent (commonly described as taking equal to or over 95% of ART medication) . This level of drug adherence is very difficult to attain for PLH who are unable to sustain scheduled clinic follow-up visits, as studies indicate that the majority of patients with LTFU stop their ART. Stopping ART has been reported to quickly increase the risk of developing high serum viral load and other adverse health consequences [2, 5, 8, 9] including ART drug resistance, progression of HIV to AIDS, premature mortality, and re-infection, or infection of others with resistant strains [2–4, 10, 11].
In sub-Saharan Africa, LTFU is a factor reported to account for attrition from most ART programs than other causes [12–14] and varies for different groups of PLH. For instance LTFU ranges from 19 to 89% among women accessing Prevention of Mother-To-Child HIV transmission (PMTCT) services and 22% among HIV infected children . In Tanzania, where this study was conducted, LTFU among PLH enrolled in ART care programs is estimated to be 49% and it varies with duration in ART care. About 18 and 36% of PLH in Tanzania are reported to be LTFU at the end of their first and third year respectively after starting ART. A report published by the Ministry of Health and Social Welfare in 2012 indicated that attrition of patients due to death accounted for only a small percent of PLH that was lost from ART treatment (5–8%). Most attrition was due to other unknown causes resulting in the majority of the LTFU [14, 16].
Some of the factors reported to contribute to LTFU from ART care in Tanzania include individual factors such as advanced clinical and immunological disease stage, younger age, malnutrition, low education, depression, and poor psychological support [17–21]. The World Health Organization (WHO) reported other individual risk factors for LTFU from ART care commonly reported from resource-limited countries, including feeling better, pill burden, treatment fatigue, work as well as home responsibilities, and migration—mobile populations (‘silent transfers’)—to other ART service providers . Likewise system/infrastructural factors contributing to LTFU from ART care have been reported from East Africa. These include longer turnaround time of laboratory tests, drug stock outs, and clinics operating for less than 4 days a week  LTFU therefore results from complex individual and programmatic/system challenges facing PLH and ART programs that require greater effort to adapt effective interventions to maximize the benefit of ART programs for PLH and the role of ART as an HIV transmission prevention approach [3, 20, 24, 25].
Although a number of studies have reported LTFU and other ART treatment outcomes among PLH in Tanzania, most did not include assessments of additional interventions provided to PLH apart from routine ART care. Thus there is still limited information on effective interventions for PLH in care and receiving ART for reducing LTFU and improving other HIV treatment outcomes [8, 14]. In particular, those that influence psychological factors that have been reported to predict HIV risk behaviors, poor adherence, low retention and poor treatment outcomes among PLH . Providing psychological counselling, offering psychoeducation, facilitating psychosocial support and providing support to PLH to reduce psychosocial challenges including depression, anxiety, relationship/family turmoil and poor communication have been reported to increase adherence to ART [21, 27–30]; however, not much has been reported on how psychosocial interventions may impact LTFU and other HIV treatment outcomes in Tanzania.
The primary objective of our study was to examine associations between exposure to the NAMWEZA intervention and HIV clinical outcomes as well as LTFU. In addition, factors associated with LTFU were assessed among PLH in Dar es Salaam, Tanzania.
We conducted a prospective cohort study involving 416 HIV infected adult participants exposed to the NAMWEZA intervention and 408 HIV-positive unexposed ‘comparison group’. The data for this analysis was collected from January 2012 to December 2013 and were obtained from NAMWEZA intervention electronic records and National HIV care electronic database known as CTC2 available at each of participating sites.
Both NAMWEZA exposed and unexposed participants were eligible if HIV infected, 18 years of age and above, living in the catchment area of the HIV care and treatment center (CTC), registered for HIV care and treatment at the study CTCs, initiated on ART and had used ART for at least 3 months (enrolment criteria for both NAMWEZA exposed and controls), and resident in the Kinondoni District. The ART regimen and other standard HIV related health care services were provided similarly between the two groups. Exclusion from the study occurred if poor health prohibited participant’s recruitment, if they had not started ART and for the NAMWEZA exposed, if unable to provide informed consent for participation, and not planning to remain resident for at least 2 years in the Kinondoni District.
Methods of follow up
Both the intervention and control participants were seen monthly at the clinic for routine ART care during the time period of follow-up (January 2012 to December 2013). HIV care included adherence counseling, seeing a physician for any health concerns, providing laboratory tests as scheduled and any other tests that a physician might feel the patient needs at that visit. Each clinic has trained and experienced community based health workers (CHWs) who tracked missing PLH. At the time of the study, data were collected prospectively from the clinical databases. The CHW worked with the clinic data clerks under the supervision of the clinic nurse in-charge to obtain daily lists of PLH who miss their scheduled clinic visits. After obtaining the list, they followed up the missing patients through phone calls (1 week after missing a scheduled clinic visit) and a home visit 2 weeks after a missed clinic appointment if phone calls were unsuccessful and or the patient didn’t come to the clinic. The CHW provided reports that were entered into the CTC2 database daily to update patients’ vital status (i.e. not ascertained, ascertained alive or died). The CHW continued to track those not found for three or more months after which if vital status could not be ascertained they are declared LTFU.
Summary of the contents of each NAMWEZA Training Session
An introductory session: which include welcoming the participants, setting ground rules participants sharing life stories and group lived values, the story of the 5th province, whom do you hear calling your name and an introduction of appreciative inquiry in communication, how to spot abilities of others, dreaming positively for future, and how to be wise
Titled Love relationship and emotions: include more training to use appreciative inquiry in communication, exploring values of love and how to view emotions from self and others (anger, sadness), as an invitation and a communication instead of an attack, and how to communicate back
Titled Valuing others and self: include sharing experiences that influence life, how we value ourselves, how we value our own words and imagined negotiation
Titled Happiness, safer sexual relationships, healthy living; include drawing a map of safer and happy living, appreciative inquiry, following direction education and discussions on HIV transmission and prevention myths and facts about HIV, following directions, positive networking and condom use
Titled Developing assertiveness skills; revisions and role plays on appreciative inquiry, ability spotting, exploring hopes and fear, taking control during communications by using proper posture, eye contact and voice tones, I see, I feel, I want, putting things into practice drawing bodies as roadmap for sexually learning
Titled Deepening and expanding assertiveness skills: More revision and role plays on appreciative inquiry, ability spotting, wider assertive skills building including manipulative how to manage an ambiguous situation, pushing the line during communication and entrepreneurial future
Titled Disclosure 1; of an HIV positive status; confidentiality, appreciative inquiry, good care giver, human rights, telling and listening, how to become a good listener
Titled Disclosure 2; challenges and positive possibilities, taking care of self, how to tell family and close relatives, sexual partners, supporting each other and spiders web
Titled Visualizing; targets on focusing the participants to explore, reflect skills and resources in them and others, and create a microeconomic plan. This involve visualizing and drawing hoped for community/work, Appreciative inquiry exploring income generating skills including how to access and manage microfinances
Titled The future; This is the final session that focuses on what has been learned during the all the other sessions by revisiting the tree of life and future possibilities for advocacy. Participants revisit and add on the previously tree of live adding their abilities and building on dreams and creating action plans for the future, mental gifts, tree of abilities and how to move in the community
Sessions were highly participatory and active learning occurred with the opportunity to practice learned skills and provide feedback in subsequent sessions. Training occurred in age and gender specific groups (women <35 years of age; men ≤35 years; women ≥35 years; and men ≥35) to foster group cohesion through shared experiences. Groups were facilitated by trained peer PLH. NAMWEZA exposed participants attended 1–10 sessions, with an average of 7.7 sessions; while the comparison group did not attend any sessions. All the sessions were available to all participants, who were informed of the dates and times and expected to attend all the 10 sessions. In addition, both the NAMWEZA exposed PLH and the comparison group received routine ART care including monthly prescriptions for medications, as well as other aspects of clinical care and ART adherence counseling sessions.
Loss to follow-up (LTFU), immunological (CD4), and other clinical outcomes including weight, hemoglobin level, and number of scheduled clinic visits attended were examined. For this study a patient was LTFU if he/she did not attend three scheduled clinic visits in three consecutive months with no reported/documented death or transfer out .
Outcome data were obtained from the CTC electronic database which contains routinely collected clinical data for PLH accessing care at each of the participating sites. Data for sociodemographic measures, duration on ART, and all outcome variables including CD4, weight, and hemoglobin levels; as well LTFU measures were extracted from the database at 8, 16, and 24 months of follow-up.
Descriptive statistics for sociodemographic factors and clinical variables were estimated at baseline, including frequencies for categorical data as well as means and standard deviations for continuous variables. Chi square, Fisher’s exact tests, and t-tests were used to compare the frequencies for categorical variables and the means of continuous variables from the intervention and the comparison groups to identify variables that were significantly different from the two groups. Random effects models were performed to examine the bivariate associations between the intervention status and clinical outcomes, including CD4 cell count, weight change, HGB levels, and LTFU. In the multivariate models variables that had a p value of 0.2 or less at baseline for the intervention and comparison groups were controlled for. In addition, a missing variable indicator was included to address missing data and logistic regression models were used to predict factors associated with LTFU for intervention and comparison groups. A Kaplan–Meier survival curve was used to estimate retention among the intervention and comparison groups. We also examined factors associated with LTFU using Cox proportional hazards regression models. SAS statistical software (version 9.3) was used for the analysis .
All 450 HIV-positive participants of NAMWEZA intervention were eligible to participate. Thirty-four (7.5%) of the exposed participants had absent or incomplete clinical information and were dropped from the analysis. The final number of participants in the intervention group included in this study was 416 (92%). A total of 408 PLH were identified from the CTC2 database based on the same eligibility criteria.
Baseline sociodemographic characteristics for PLH receiving HIV treatment in Dar es Salaam, Tanzania
Comparison group, N = 408
n (%)/mean (SD)
Intervention, N = 416
n (%)/mean (SD)
District of residence
Age groups in years
Lives with partner (married or cohabiting)
Single (never married or widowed)
House wife/house husband
Baseline clinical characteristics for PLH receiving ART care in Dar es Salaam, Tanzania
Mean CD4 (SD)
Severe immunosuppression (CD4 < 200)
Moderate immune suppression (CD4 = 200 to <350)
Not immune suppressed (CD4 ≥ 350)
Mean hemoglobin (SD)
Low hemoglobin(anemia) mean (SD)
Severe anemia (<8.5)
Moderate anemia (8.6 to <10)
Mild anemia (10 to <12)
No anemia (>12)
Mean weight (kg) (SD)
Weight groups (kg)
Mean duration on ART at baseline, mean (SD)
For the clinical outcome variables baseline CD4 cell count in the intervention and control groups was 308 and 270 cells/mm3, respectively; and mean hemoglobin (HGB) levels were 9 g/dl for the intervention and 10 g/dl for the comparison group. The mean body weight of the participants was 61 and 60 kg in the intervention and control groups respectively. Similar to most demographic variables, the clinical parameters were not significantly different in the two groups (Table 3).
The mean duration on ART medication was 20 months in the intervention and 18 months in the comparison group (p = 0.23). The median follow up time was 20.2 months in the intervention and 23.3 months in the intervention group (Table 6). The average number of routine clinic visit made was significantly higher at 22.8 visits in the intervention group, compared to 16.9 visits in the comparison group (p = 0.003) (Table 6).
Univariate and multivariate analyses of intervention vs. comparison group
Covariate of interest
CD4 count (cells/mm3)
Intervention vs. comparison
CD4 change over time
24.6 (−37.02, 86.23)
26.9 (−36.31, 90.19)
2.9 (1.19, 4.64)
2.7 (0.96, 4.45)
2.8 (0.84, 4.75)
2.8 (0.87, 4.79)
−0.58 (−1.72, 0.56)
40.56 (12.41, 68.72)
Intervention vs. comparison
Weight change over time
0.9 (−6.97, 8.71)
−2.64 (−9.91, 4.620)
0.14 (−0.073, 0.35)
0.27 (0.09, 0.44)
0.15 (−0.03, 0.31)
0.14 (−0.34, 0.31)
0.08 (−0.01, 0.17)
−0.79 (−3.04, 1.46)
Hemoglobin (HGB) (in g/dl)
Intervention vs. comparison HGB change over time
0.12 (−1.60, 2.05)
0.23 (−1.61, 2.06)
0.03 (−0.02, 0.09)
0.031 (−0.02, 0.09)
0.02 (−0.01, 0.05)
0.020 (−0.01, 0.05)
Age (in years)
0.01 (−0.01, 0.03)
−0.61 (−1.05, −0.18)
Lost to follow-up
Intervention vs. comparison
0.62 (0.51, 0.76)
0.64 (0.52, 0.78)
LTFU change over time
0.92 (0.91, 0.93)
1.01 (1.01, 1.03)
0.93 (0.51, 0.76)
0.92 (0.92, 0.93)
0.99 (1.00, 1.001)
0.95 (0.89, 1.02)
Factors associated with LTFU among the intervention and comparison group participants
Univariate HR (95% CI)
Multivariate HR (95% CI)
Univariate HR (95% CI)
Multivariate HR (95% CI)
0.75 (0.54, 0.03)
1.55 (1.11, 2.15)
3.20 (2.52, 4.53)
2.13 (1.63, 2.75)
200 to <350
0.31 (0.21, 0.45)
0.86 (0.58, 1.27)
2.52 (1.98, 3.21)
1.83 (1.41, 2.36)
0.98 (0.99, 1.02)
0.29 (0.02, 0.32)
0.96 (0.68, 1.36)
1.48 (0.95, 2.31)
0.94 (0.97, 2.03)
0.34 (0.03, 2.01)
1.60 (1.31, 1.96)
2.01 (1.63, 2.49)
1.11 (0.60, 2.07)
1.93 (0.91, 3.67)
0.40 (0.38, 0.43)
3.24 (2.97, 3.55)
8.5 to <10
0.68 (0.47, 0.99)
0.44 (0.42, 0.46)
0.48 (0.46, 0.51)
10 to <12
1.91 (1.32, 2.77)
1.17 (1.11, 0.26)
0.57 (0.55, 0.60)
1.00 (0.95, 1.05)
30 to <40
40 to <50
Cumulative attendance of scheduled clinic visits, LTFU, LTFU by sessions at and follow up time the end of the 24 months among the intervention and comparison groups
Average number of scheduled visits in months, n (SD)
Cumulative lost to follow up by end of 24 months, n (%)
LTFU among those who attended 1–6 sessions, n (%)
LTFU among PLH attending 7–10 sessions, n (%)
Median follow up time (months)
This study examined associations between exposure to a peer facilitated psychosocial intervention and clinical outcomes among PLH receiving ART. Participants exposed to the NAMWEZA intervention saw significant improvement in clinical outcomes that were not seen among those who did not receive the NAMWEZA intervention. Weight gain, CD4 counts, and hemoglobin all significantly increased among NAMWEZA participants, whereas smaller non-significant gains were seen in the comparison group. The NAMWEZA intervention had lower LTFU rates and participants were more likely to remain in treatment. The NAMWEZA protective effects against LTFU had a dose–response effect with lower rates observed among those who attended more of the NAMWEZA sessions.
In studies that have reported ART clinical outcomes among PLH, low CD4, younger age, male gender, low HGB, and weight were commonly reported to be associated with LTFU [8, 14, 24, 36]. In this study these risk factors for LTFU were all independently significantly associated with LTFU among PLH in the comparison group but were not found for intervention group participants. These findings are similar to other studies reporting ART treatment outcomes and rates of LTFU [8, 14, 36]. In addition, the cumulative rates of LTFU were three times higher in the comparison group as compared to the intervention group. This is also reflected in the average number of clinic visits which was significantly lower among the comparison group.
This variation could be related to the effect of exposure to the psychosocial intervention (NAMWEZA) in addition to routine ART care, and suggests that NAMWEZA may have had an effect on reducing LTFU in HIV care. Such interventions could be considered for integration within the ART care and treatment clinics to reduce LTFU.
The observed increase in CD4 counts and hemoglobin levels in both groups was expected since participants in both groups were receiving ART medications and were likely to show clinical improvements related to the duration of treatment [15, 37, 38]. However, the intervention group participants showed a higher increase in both CD4 counts and hemoglobin levels compared to the control group. Close follow up of PLH during the NAMWEZA intervention could have prompted more clinic visits and greater adherence to ART by exposed participants compared to unexposed group participants. Furthermore, the intervention addressed psychosocial concerns which have been reported to hinder adherence to ART and retention in care . This is similar to what was observed in Zimbabwe and Zambia where a psychosocial intervention known as “mothers2mothers” (m2m) was found to improve retention and adherence to the Option B+ antiretroviral regimens among HIV infected women [39, 40]. Although these studies were based on pregnant and breastfeeding women, the participants were taking a full regimen of ART similar to participants in this study. Better management of psychosocial concerns in the intervention group could also explain the significantly higher weight gain over time for NAMWEZA when comparing participants to those in the unexposed group.
To our knowledge this is the first intervention study where PLH receiving ART medication were provided a psychosocial intervention that showed improvements in selected ART treatment outcomes. The study took place in an area which has a high HIV prevalence, especially among women, and a significant number of PLH receiving ART medications for varying durations.
There are a number of limitations for this study. The routinely collected clinical data used to select participants for this study had many gaps in information since the purpose of data was for clinical care and not research. We excluded from the analysis of this study (both intervention and control arms), participants who had more than 50% missing information in the 12 months before the study, perhaps limiting the representativeness of the study results. Although the study is observational, major confounders have been controlled for in the study, and selection of participants according to the same eligibility criteria may have reduced potential bias.
The findings suggest that providing additional psychosocial support to PLH receiving ART can reduce LTFU. Such support needs to be formalized and integrated with HIV treatment and care. In addition, working with peer supporters in this context was feasible and is likely generalizable to other resource-limited settings with a significant burden of HIV. Facilitating such interventions could in the long run reduce expenditures due to adverse health outcomes resulting from LTFU in HIV care.
HS lead author, lead the development, monitored implementation of the study, data collection, analysis, and interpretation of the results. In addition she revised and incorporated inputs from the rest of the authors on the manuscript. SK contributed on reviewing the proposal, consents development, supervising the implementation of the study, she also participated in the review and editing of the paper. MCSF assisted in development of data collection tools, consent forms the proposal, reviewing and redrafting some of the sections of the paper. EM worked on data cleaning, analysis and interpretation of results. MS worked on reviewing and ensuring consents and study tools are in a clear local language, supervised proper data confidentiality and management at the sites. JK reviewed and advised on the design, analysis and interpretation of findings. FM advised on the methods and participated in the review of the manuscript. JT principle investigator; oversaw the design, data cleaning, and analysis. He advised on the statistical methods, models and tests, and on the interpretation of the results. All authors contributed to the writing of the paper. All authors read and approved the final manuscript.
We would like to acknowledge all our participants, and health facilities’ nurses, doctors, managers and all our research assistants who were involved in this study.
All authors declare that they have no competing interests.
Availability of data and materials
The datasets generated and analyzed during the current study are not publicly available due because they include clinical care and demographic information for PLH, but are available from the corresponding author on reasonable request.
Approval to use NAMWEZA and CTC2 national data
Approval was sought from the Principle Investigators (PIs) of the main study from which this adjunct study was conducted known as; NAMWEZA-change agents study for use of this data. Likewise the use of CTC2 National database from participating sites followed the Tanzanian national guidelines of conducting research through seeking and obtaining approval from the National Institute of Medical Research (NIMR) and the District Medical office of the participating sites before the study rolled out.
Ethics approval and consent to participate
Averbal consent was initially sought from potential participants in health facilities to allow our research assistants to introduce the study to them, followed by a signed informed consent of PLH who agreed to join the study before enrollment. The study was approved by three institutions; the Institutional Review Boards (IRBs) at the Harvard School of Public Health (HSPH), The Muhimbili University of Health, and Allied Sciences (MUHAS) IRB, and the National Institute for Medical Research (NIMR) IRB in Tanzania.
This work was supported by the Tanzania HIV/AIDS and TB Center through International Clinical, Operational, and Health Services Research and Training (ICOHRTA) program at Muhimbili University of Health and Allied Sciences, Dar es Salaam Tanzania, which is funded by the Fogarty funded by Fogarty International Center, National Institutes AQ8 of Health (Grant Number 5U2RTW008258). The funding body did not have any role in the design of the study and collection, analysis, interpretation of data and in writing the manuscript.
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