Mother-to-Child Transmission (MTCT) of HIV accounts for more than 90% of all new pediatric HIV infections [
In a 2014 Malawian study, 23.5% of the mothers who were initiated on lifelong ART at the antenatal clinic were lost to follow-up after one year [
In 2002, Uganda adopted and began implementing the first National PMTCT guidelines. This came as recommendations from findings of the PMTCT pilot program of 2000 which had over time expanded to cover 56 districts by the end of 2003 [
In 2010, Uganda adopted a third set of World Health Organization (WHO) guidelines. The recommendations were either use of Option A (maternal AZT during pregnancy plus SdNvp at delivery to the mother and the newborn and two weeks of AZT/3TC to the mother) or the use of highly active antiretroviral therapy (HAART) also known as Option B regimen [
According to the Ministry of Health of Uganda, these new policy guidelines focus not only on eliminating HIV transmission via mother to child, but also on reducing mortality and morbidity among HIV positive women and their HIV exposed or infected infants [
In Ntungamo district, the program was launched in March 2013 with the support of Elizabeth Glaser Pediatric AIDs foundation (EGPAF). EGPAF is a non-governmental organization (NGO) running HIV and TB services in the southwestern part of Uganda. Health facilities in Ntungamo district that were implementing the 2nd PMTCT guidelines (Option A) slowly transitioned to lifelong ART (the 4th PMTCT guidelines). EGPAF built capacity for health workers to provide lifelong ART services in high patient volume sites (health centre (HC) IVs and hospitals) and later scaled up to lower volume sites (HCIIIs). This was followed up with mentorships and provision of necessary logistics to enable a smooth transition.
However, several challenges have been noted in the implementation of the lifelong ART program and such challenges include mothers initiated on HAART either during pregnancy, delivery, or breastfeeding getting lost along the way and not returning to the clinic for monitoring [
We aimed at determining the proportion of those on lifelong ART for PMTCT in Ntungamo district who were lost to follow-up and associated factors.
This was a cross-sectional study which employed both qualitative and quantitative methods of data collection.
The study was carried out in Ntungamo district, located in south western Uganda. The district has 42 health facilities of which one hospital and 16 health centres offer PMTCT. However, eight of these health facilities had adopted and were offering lifelong ART for PMTCT in the district, between September 1st, 2013, and September 30th, 2015. The study involved mothers who were attended to at these health facilities during this period. It also included peer mothers that were once enrolled on lifelong ART and were involved in the follow-up of mothers on PMTCT within the district.
Mothers who had no telephone contact and/or no clear physical address. Mothers who could not be traced to their physical address. That is, those who had either changed physical address or changed the telephone contact.
Two focus group discussions were conducted at two facilities that had the highest patient volumes in the district. The FDGs were conducted among pregnant and lactating mothers on lifelong ART for PMTCT during clinic days.
Fifteen KIIs were held with peer educators who work with health workers and are assigned the duty of follow-up of mothers once enrolled into PMTCT care. During the FGDs, two research assistants were present: one is to facilitate the discussion while the other was taking notes. Audio recordings for both FGDs and KIIs were also taken by the PI during the interactions, with permission from the respondents.
We analyzed data using STATA version 12. Percentages were used to determine the proportion of HIV positive pregnant and lactating mothers enrolled on lifelong ART for PMTCT, who were lost to follow-up defined as HIV positive pregnant and lactating mothers initiated on lifelong antiretroviral therapy (ART) for PMTCT that had not returned to the clinic in > 90 days from their last scheduled appointment.
Log binomial regression was used to determine factors associated with LTFU among pregnant and lactating mothers initiated on lifelong ART. Prevalence ratios were used as the measure of association since the outcome (LTFU) was >10% (37%).
Following bivariable analysis, we selected variables with a significance level of 10% (P<0.1) for inclusion in the multivariable analysis. Multivariable analysis was done using the stepwise approach-backward elimination method. Statistical significance of variables for inclusion in the final model was set at a p value <0.05.
This study was approved by Makerere University School of Public Health Higher Degrees Research and Ethics Committee and permission was obtained from the District Health Officer in Ntungamo. All respondents eligible for the study provided written consent. To ensure confidentiality, all interviews were conducted in privacy and respondent questionnaires were identified using unique identifiers.
Overall 480 mothers were identified as having been initiated on lifelong ART for PMTCT between September 1st, 2013, and September 30th, 2015; of these 302 mothers met the inclusion criteria (had a clear physical address or a telephone contact). However, 279 mothers were successfully traced and these were included in the study. Out of these 279 mothers, 103 (37%) were identified as lost to follow-up.
The mean age (SD) was 28.2 (4.6) years and the median age (IQR) was 28 (25-30 years) and 106 (38%) of the mothers were in the age range of 24 to 28 years. 74% were married and 56% were subsistence farmers. Over 99% knew that the drug was safe for them and the baby and that the administered drug works. Majority of the mothers had positive perceptions towards the medication they were receiving; however, approximately one-third (29.3%) feared taking their medication, and a quarter reported having experienced side effects (25.9%) (Table
Social demographic characteristics of the mothers (N=279) and individual perceptions of HIV positive women towards highly active antiretroviral therapy (HAART).
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28.2 (4.6) | |
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28 (25-30) | |
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46 | 16.5 |
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106 | 38 |
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92 | 33 |
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30 | 11 |
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5 | 1.8 |
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79 | 27.9 |
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22 | 7.9 |
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34 | 12.2 |
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144 | 51.6 |
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3 | 1.1 |
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15 | 5.4 |
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40 | 14.4 |
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202 | 72.7 |
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15 | 5.4 |
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4 | 1 |
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36 | 12.9 |
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207 | 74.2 |
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18 | 6.5 |
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18 | 6.5 |
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156 | 56.5 |
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43 | 15.6 |
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24 | 8.7 |
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28 | 10.1 |
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25 | 9.1 |
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3 | 1.1 |
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276 | 98.9 |
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6 | 2.2 |
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272 | 97.8 |
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198 | 71 |
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81 | 29 |
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206 | 74.1 |
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72 | 25.9 |
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5 | 1.8 |
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274 | 98.2 |
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3 | 1.1 |
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276 | 98.9 |
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117 | 42.6 |
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158 | 57.5 |
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5 | 1.8 |
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274 | 98.2 |
We successfully traced and interviewed 279 HIV positive pregnant and lactating mothers. Of the 279 mothers interviewed, 103 (37%) were lost to follow-up (Figure
Proportion of mothers on lifelong ART for PMTCT who were lost to follow-up between Sept 2013 and Sept 2015, n= 279.
From the bivariate analysis, variables that had a p value of < 0.1, such as fear of swallowing ARV drugs, perception that the mother can infect the child, disclosure to other relatives other than the spouse, and transport costs, were analyzed further in multivariable analysis.
At multivariable analysis, transport costs above $2.75
Factors associated with LTFU among HIV positive pregnant and lactating mothers on lifelong ART for PMTCT.
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16/46 | Ref | ||
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39/106 | 1.05(0.66-1.7) | ||
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31/92 | 0.96(0.59-1.58) | ||
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16/30 | 1.53(0.91-2.57) | ||
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1/5 | 0.46(0.48-4.55) | ||
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32/79 | Ref | ||
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7/22 | 1.4(0.92-2.06) | ||
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19/34 | 0.78(0.4-1.53) | ||
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45/144 | 0.77(0.53-1.1) | ||
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8/18 | Ref | ||
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76/207 | 0.83(0.47-1.43) | ||
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15/36 | 0.94(0.49-1.79) | ||
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4/18 | 0.5(0.08-1.52) | ||
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62/156 | Ref | ||
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17/43 | 0.99(0.65-1.5) | ||
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9/24 | 0.94(0.54-1.6) | ||
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7/28 | 0.63(0.32-1.23) | ||
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6/25 | 0.6(0.29-1.24) | ||
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7/15 | Ref | ||
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75/202 | 0.79(0.45-1.41) | ||
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16/40 | 0.86(0.44-1.66) | ||
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0/3 | Omitted | ||
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3/15 | 0.43(0.14-1.35) | ||
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1/3 | 0.7(0.31-3.8) | ||
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1/3 | Ref | ||
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102/276 | 1.17(0.2-5.5) | ||
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62/198 | Ref | ||
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41/81 |
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76/206 | Ref | ||
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27/72 | 1.02(0.72-1.44) |
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0.59 |
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3/5 | Ref | ||
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100/274 | 0.6(0.29-1.26) | ||
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7/18 | Ref | ||
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96/261 | 0.91(0.34-2.43) | ||
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1/3 | Ref | ||
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102/276 | 1.1(0.2-5.5) | ||
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33/117 | Ref | ||
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66/158 |
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2/5 | Ref | ||
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101/274 | 0.92(0.31-2.7) | ||
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29/71(40.8) | Ref | ||
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40/99(40.4) | 0.98(0.68-1.43) | ||
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72/106(32.0) | 0.78(0.53-1.16 | ||
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30/99(30.3%) | Ref | ||
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25/73(34.2%) | 1.13(0.7-1.74) | 1.09(0.70-1.7) | 0.7 |
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18/34(52.1%) |
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19/67(28.3%) | Ref | ||
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28/79(35.4%) | 1.2(0.77-2.03) | 1.5(0.83-2.7) | 0.2 |
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56/133(42.1%) | 1.5(0.96-2.28) |
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19/69 | Ref | ||
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81/199 | 1.48(0.97-2.28) | ||
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32/68 | Ref | ||
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50/135 | 0.79(0.56-1.10) | ||
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153 | Ref | ||
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126 |
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1.38(0.86-1.7) | 0.4 |
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82/243 | Ref | ||
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20/35 |
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1.3(0.84-2.1) | 0.2 |
PR: prevalence ratio.
Qualitative evaluation was done to explore further mothers views as to why women on lifelong ART get lost to follow-up. A total of two focus group discussions (FGDs) with mothers and 15 key informant interviews (KIIs) with peer mothers were conducted. The factors that were repeatedly common throughout these interviews were fear of swallowing ARV drugs, domestic violence following disclosure, HIV related stigma and discrimination, inadequate facilitation of peer educators and mothers, long patient waiting time, and cost of transportation to the health facilities.
This study found that the proportion of mothers who get lost to follow-up from the PMTCT program was 37%. A study done in Malawi revealed the LTFU as 30% after 3 years of initiation on lifelong ART [
Mothers who had to incur transport costs above $2.75 (adj PR 1.6, CI: 1.02-2.55) were more likely to be lost to follow-up. In a rural setting transport is costly because most mothers are subsistence farmers with a poor socioeconomic status. This forces mothers to resort to walking long distances. This finding is in agreement with other studies, where distance to the clinic and transport cost were found to be major barriers to retention in care in a wide variety of settings in Africa including Uganda [
Waiting at the health facility for more than an hour before being attended to by a health worker was a predictor of LTFU (adj PR 1.74, CI: 1.02-2.96). This may be a result of low staffing levels compared to the large volumes of patients, hence leading to the long waiting time. A study done in Northern Uganda also noted that high patient loads at the facilities caused long patient waiting times [
Knowing that the mother could infect their baby was a predictor for LTFU (adj PR 1.76, CI: 1.15-2.70). This indicates that mothers are knowledgeable about the transmission of HIV to their babies. But, upon defaulting from the PMTCT, they perceive that their breastfed child is HIV positive and hence fear returning to the clinic to avoid being blamed by the health workers if the child turns out to be HIV positive on testing. Improving health provider attitudes and providing customer care training to health providers could help change the way patients perceive care and their choice on whether to continue receiving care or not.
Interviews from the qualitative evaluation also noted high transport costs and long patient waiting time as some of the predictors of loss to follow-up. Other factors that were mentioned as predictors of LTFU included fear of swallowing ARV drugs, domestic violence following disclosure of HIV status, stigma and discrimination, and inadequate facilitation of the peer educators.
Fear of swallowing ARVs as a reason for getting lost to follow-up needs to be recognized. The size and smell of the tablets, taking the medication without an assurance of a meal, and the anticipated side effects are some of the reasons mothers stopped taking the ARVs, hence self-censoring themselves from coming to the clinic. Studies have also shown that poor adherence to drugs is attributed to the feared side effects [
Mothers interviewed in this study expressed the fear of stigma and discrimination from the community and family members. This was attributed to the fear of domestic violence after disclosing their status to their spouses. Some quantitative studies have shown this to be true [
The strength of this study is that women were traced to their physical addresses and therefore, we were able to know if a mother was lost to follow-up or active in care. However, this study had some important limitations that should be considered when interpreting the results. First the cross-sectional nature of the study design does not confirm definitive cause and effect relationship between dependent and independent variables. In addition, the study did not account for the mothers that could not be traced and hence could lead to underestimation of the LTFU. In order to get more insight of the study’s third objective, we should have conducted in-depth interviews with mothers that we had found to be lost to follow-up as this would give a clear view of why mothers get lost to follow-up. The use of the definition of LTFU in this study as patients who were started on lifelong ART and not seen for more than 90 days after their scheduled appointment has a weakness as some mothers were found to have transferred to other facilities than the original facility where they were initiated on treatment. However, since mothers were being interviewed and had to recall some instances which were used to ascertain LTFU, this could have some recall bias.
There was substantial LTFU of mothers initiated on lifelong ART for PMTCT in Ntungamo district. Personal fears, wrong perceptions among patients, stigma, discrimination in the community, high transport costs, long patient waiting time, and inadequate facilitation of peer educators are some of the bottlenecks to achieving success desired from the provision of lifelong ART for PMTCT.
Focus should be directed to provision of regular quality pre-ART and ART adherence counseling, provision of routine health education, strengthening HIV awareness campaigns through local village authorities, increasing HIV outreach services, community engagement, and building community networks through peer support. Large scale research to look at the rates of LTFU at the different points of PMTCT cascade would inform targeted PMTCT interventions.
This is an approach recommended by World Health Organization to prevent mother-to-child HIV transmission with which all HIV positive pregnant and lactating women are initiated on antiretroviral therapy (ART) for life regardless of CD4 count or WHO staging
Patients who were started on lifelong ART and not seen within 90 days of their scheduled appointment
HIV positive patients who are trained to provide peer support and counseling to their fellow HIV positive patients and also follow up mothers by virtue of their good adherence and to some extent their level of education
Antenatal care
Elizabeth Glaser Pediatric AIDs Foundation
Virtual Elimination of Mother-to-Child Transmission
Highly active antiretroviral therapy
Health centre
Human immunodeficiency virus
Loss to follow-up
Maternal and child health
Ministry of Health
Prevention of Mother-to-Child Transmission
United Nations Joint Program on AIDS
Voluntary Counseling and Testing
World Health Organization.
The corresponding author had full access to all the data in the study and had final responsibility for the decision to prepare the manuscript and submit for publication.
The authors declare that there are no conflicts of interest.
The authors would like to thank the study subjects for their willingness to participate in the study. They would also like to thank the district authorities and the various health workers working in the health facilities. Last but not least, heartfelt thanks are due to the research assistants.