Predictors of loss to follow up among HIV-exposed children within the prevention of mother to child transmission cascade, Kericho County, Kenya, 2016
Hudson Taabukk Kigen1,5,&, Tura Galgalo3, Jane Githuku1, Jacob Odhiambo4, Sara Lowther3, Betty Langat5, Joyce Wamicwe4, Robert Too2, Zeinab Gura1
1Field Epidemiology and Laboratory Training Program (FELTP), Ministry of Health, Nairobi, Kenya, 2Moi University, School of Public Health, Eldoret, Kenya, 3US Centers for Diseases Prevention and Control (CDC), Division of Global Health Protection (DGHP), Kenya, 4National AIDS and STI Control Program (NASCOP), Ministry of Health, Kenya, 5County Government of Kericho, Department of Health, Kericho, Kenya
Hudson Taabukk Kigen, Field Epidemiology and Laboratory Training Program (FELTP),
Ministry of Health, Nairobi, Kenya, County Government of Kericho, Department
Health, Kericho, Kenya
HIV-exposed infants (HEI) lost-to-follow-up (LTFU) remains a problem in sub Saharan Africa (SSA). In 2015, SSA accounted >90% of the 150,000 new infant HIV infections, with an estimated 13,000 reported in Kenya. Despite proven and effective HIV interventions, many HEI fail to benefit because of LTFU. LTFU leads to delays or no initiation of interventions, thereby contributing to significant child morbidity and mortality. Kenya did not achieve the <5% mother-to-child HIV transmission target by 2015 because of problems such as LTFU. We sought to investigate factors associated with LTFU of HEI in Kericho County, Kenya.
a case-control study was conducted in June 2016 employing 1:2 frequency matching by age and hospital of birth. We recruited HEI from HEI birth cohort registers from hospitals for the months of September 2014 through February 2016. Cases were infant-mother pairs that missed their 3-month clinic appointments while controls were those that adhered to their 3-month follow-up visits. Consent was obtained from caregivers and a structured questionnaire was administered. We used chi-square and Fisher's Exact tests to compare groups, calculated odds ratios (OR) and 95% confidence intervals (CI), and performed logistic regression to identify independent risk factors.
we enrolled 44 cases and 88 controls aged ≥3 to 18 months: Cases ranged from 7.3-17.8 months old and controls from 6.8-17.2 months old. LTFU cases- caregivers were more likely than controls- caregivers to fear knowing HEI status (aOR= 12.71 [CI 3.21-50.23]), lack knowledge that HEI are followed for 18 months (aOR= 12.01 [CI 2.92-48.83]), avoid partners knowing their HEI status(OR= 11.32 [CI 2.92-44.04]), and use traditional medicine (aOR= 6.42 [CI 1.81-22.91]).Factors that were protective of LTFU included mothers knowing their pre-pregnancy HIV status (aOR= 0.23 [CI 0.05-0.71]) and having household health insurance (aOR= 0.11 [CI 0.01-0.76]).
caregivers' intrinsic, interpersonal, community and health system factors remain crucial towards reducing HEI LTFU. Early HIV testing among mothers, disclosure support, health education, and partner involvement is advocated. Encouraging households to enroll in health insurance could be beneficial. Further studies on the magnitude and the reasons for use of home treatments among caregiver are recommended.
Pediatric HIV remains a major preventable disease of global public
health concern. In 2015, 2.3 million children aged <15 years were living
with HIV and >150,000 new HIV infections in children were reported worldwide
[1,2]. Globally, 10-14% of children
received HIV treatment, and approximately 30% of HIV-exposed infants
(HEI) are reported as lost-to-follow-up (LTFU) from HIV programs yearly
The AIDS Progress report indicates that about 50% of the eligible
pediatric population were not accessing lifesaving ARVs due to failure to
treatment because of LTFU [6,7].
Kenya is one of 22 sub-Saharan Africa (SSA) countries that account
for over 90% of all pediatric HIV infections, the majority of which result
transmission (MTCT) [1,8]. HEI LTFU
is also common in sub-Sahara Africa, Kenya reported LTFU of 16.5-22.1%
and 11 other SSA countries reported 27.6-41.5% in the first 3 months after
in a systematic review of which quantified HEI after 18-months
follow up estimated a wide range of 19-85% LTFU .
Kenya subscribes to the Joint United Nations Programme on HIV/AIDS
(UNAIDS), Global Plan Towards the Elimination of New HIV Infections Among
by 2015, which seeks to reduce MTCT to below 5% by 2015 .
However, Kenya has yet to achieve the target of mother-to-child
HIV transmission of ≤5%,having reported over 13,000 new infant HIV
infections in 2015 . Despite aggressive plans to
ensure early access to efficacious HIV interventions and keep HIV-exposed
children in care,
children continue to drop out of follow-up care at various points
along the HIV prevention of mother to child transmission (PMTCT) cascade
The PMTCT cascade consists of multiple interventions targeting
HIV-positive pregnant mothers before delivery and mother-child pairs after
PMTCT interventions begin with HIV counselling and testing of pregnant
mothers at health facilities. During the antenatal care period, nutritional
diagnosis and treatment of opportunistic infections, and antiretroviral
drug prophylaxis are provided to all HIV-positive mothers. Upon
delivery, antiretroviral treatment is started for all HIV-exposed newborns,
services are continued including advice on safer infant feeding,
psychosocial support, early HIV infant diagnosis, family support and continued
up and treatment for mother-infant pairs for 18 months after birth.
Complete adherence to these interventions can reduce the MTCT transmission
15-45% to <5% among breastfeeding mothers. However to achieve this reduction,
countries must address the problem of LTFU [8,13].
Rural Kericho County (population 832,525, Kenya National Bureau of Statistics
([KNBS 2015]), located in South Rift valley, is one of 47 counties
of Kenya, and covers an area of 2479 km2. Kericho County has been implementing
services since 2002, but despite these efforts, the county did
not achieve the mother-to-child transmission national target of < 5% by
2015. In 2014, Kericho County adult HIV prevalence was 4.3%, the percentage
of women living
with HIV was 4.8%, the mother-to-child HIV transmission rate was
8.9%, and the 6-week infant HIV transmission rate was 6.1% [14-16].
The Kericho County HEI LTFU statistics are not available; however,
published studies conducted in Kilifi county, a rural coastal area in Kenya,
43% HEI LTFU at 2 months and 65% LTFU at 18-month .
Another study in rural Western Kenya reported a HEI LTFU of 7.4%
at 3 months and 27.4% at 18-months .
Maternal-infant pair socio-demographic factors, facility and community information
on reasons for LTFU remains limited. This study aimed to identify
factors associated with LTFU among HIV-exposed children in Kericho County,
appropriate policies to guide interventions in the implementation
of successful PMTCT programs in Kenya, and to develop hypothesis for further
Study design: we conducted a hospital-based case-control study with
case-to-control ratio of 1:2. Cases and controls were matched by hospital
and frequency matched by age group using 3-6 months, > 6-12 months and >12-18
months age categories.
Study population and sampling frame:
Kericho County has 6 sub-counties, with 160 health facilities. Kericho is the larger county hospital, and Kapkatet, Londiani, Sigowet, and Kipkelion are the sub-county hospitals (Figure 1
). In 2014, there were87 county facilities offering pediatric HIV services and PMTCT careand 73 facilities not offering any form of PMTCT services. Study participants were recruited from Kericho, Kipkelion, Fortenan, and Londiani hospitals. The four hospitals register >75% of the HIV-exposed children in the county. HIV-exposed children between 3 and 18 months of age enrolled for HIV care from September 2014 to February 2016 were recruited into the study.
HIV-exposed infant register:
ministry of Health HEI register which captures details per birth cohort of HIV-exposed infants seeking services at every facility within the country.
all HIV-exposed child 3-18 months old who were enrolled at the hospital
for HIV services and had missed appointments for ≥3 months.
all HIV-exposed child of same age category as their case, on continued HIV care at the same hospital as case, alive and attending their 3-month appointments as scheduled.
Sample size assumptions and calculations:
we assumed a two-tailed confidence
level at 95%, 80% power, a desired odds ratio (OR) of 0.3 between cases and
controls, and a 50%
]. Considering a 15% non-response rate, we
estimated a minimum sample size of 132 HEI to be necessary (44 cases and 88
controls) using Fleiss' statistical
formula in Epi-Info 7TM (US Centers for Disease Control and Prevention (CDC)-Atlanta).
Potential cases and control subjects were identified from the facility HIV-exposed
infant register, categorized by age group, allocated unique identifying numbers,
and were selected using a computer generator for random numbers.
a pre-tested standardized questionnaire was used to collect maternal-infant unique information, socio-demographic data on sex, age, caregiver's level of education, religion, source of income among others, HEI clinical and laboratory information, facility factors including distance to facility, availability of staffs, service delivery health products, facility set-up, and community-related factors to support mother-infant pairs. A trained team of community health extension workers (CHEWs) assisted in recruiting study participants' parents or legal guardians from 6thto 29th June 2016 for in-person interviews.
data analysis was carried out using Epi Info 7TM(CDC-Atlanta) for the calculation of descriptive statistics. To examine the association between co-variates and LTFU, we calculated chi-square tests, Fisher's exact tests, 95% confidence intervals (CI), and estimated odds ratios (ORs). Adjusted Ors (aOR) were calculated using a logistic regression model with factors having p-values <0.20 during bivariate analysis considered in the model. We used step-wise forward elimination analysis in developing the final model, in which factors with p-values <0.05 were considered significant.
we obtained written consent from all study participant's parents/legal guardian. Those who were not able to read or write were explained details of the study orally and their ink thumb print was deemed a proof of consent. We obtained ethical approval from Moi Teaching and Referral Hospital Ethics Review Board (IREC 2015/233 No. 1611). This study was determined to be a non-research program evaluation by the U.S. Centers for Disease Control and Prevention Center for Global Health. As an immediate benefit, broader concerted efforts were used for HEIs not receiving antiretroviral drugs and their mothers during and after the study, so that the mothers-infant pairs were traced and encouraged for follow-up, regardless of the status of their enrollment in the study. A generated list of the HEIs who were found to have defaulted and/or LTFU was also shared with facility defaulter tracing teams and program managers for further follow up and tracing.
A total of 457 HEI-caregivers were line-listed; 68 were eligible
as cases and 318 as controls. Among the 68 eligible cases, 64 (94.1%)
responded; four (5.9%) died. None of the controls declined interviews.
A total of 44
HEI cases and 88 paired controls were randomly selected and enrolled
in the study (Figure 2).
Case ages ranged from 7.30-17.80 months while controls were aged
6.80-17.20 months. Twenty-three (52.3%) cases were male and 48
(54.6%) controls were
male. Giving HEIs traditional treatments was among the reasons
for failing to adhere to clinic appointments with 31(70.5%) case
caregivers report using
traditional treatment (Table
Of the caregivers interviewed, 124 (94.0%) were mothers of the HEI; 79 (59.9%)
were aged 15-30 years (median 29 years, range 19-46 years). A total
of 127 mothers (96.2%) had attended at least one antenatal clinic
(ANC) visit (Table
2). A majority, 25 (56.8%) of the case caregivers reported not wanting
their partner/spouse to know the HIV status of the HEI. (Table
3). A total of 94 (71.2%) HEI mothers were reported to have delivered
in health facilities (Table
HEI delivered at home were significantly more likely to be LTFU than those delivered
in a facility (OR=2.35[CI 1.07-5.35]).Compared by infant weight,
there was no significant difference between the cases and controls.
There was no difference
between cases and controls by facility delivery type (Table
1). Cases were significantly more likely to have had a hospitalization
after birth than controls (OR=5.41[CI 1.90-14.61]). The reported
use of traditional treatments among HEI was associated with LTFU
(OR=5.61[CI 2.71-12.62]). As
per the national PMTCT policy and guidelines recommendation, HEIs
are to receive ART prophylaxis at birth till they are 12 weeks
old. We found no
significant difference between LTFU cases versus those HEI who
maintained their appointments relating to receipt of infant ARV
prophylaxis for the
first 12 weeks since birth (Table
1). Of the HEI aged > 6 months, 30 (22.7%) had a mid-upper arm circumference
(MUAC) below 12.0 cm. LTFU children were more likely to be malnourished
HEIs than those not LTFU (OR=4.30[CI 1.86-10.31]) (Table
In multivariable analysis, LTFU cases' caregivers were more likely than controls'
caregivers to have fear of knowing HEI status (aOR= 12.71[CI 3.21-50.23]),
lack knowledge that HEI are followed for 18 months (aOR= 12.01[CI
2.92-48.83]), avoid partners knowing their HEI status (aOR= 11.32[CI
use traditional medicine (aOR= 6.42[CI 1.81-22.91]). Factors reducing
the odds of LTFU included knowledge of mothers' pre-pregnancy HIV
0.23[CI 0.05-0.71]) and having household health insurance (aOR=
0.11[CI 0.01-0.76) (Table
We found that HEI clinic follow-up was significantly undermined by
non-disclosure, fear and its related negative attitudes towards HIV among
mothers, partners, or spouses. We also found that a lack of adequate understanding
by caregivers on the need to continue HEI clinic scheduling, and the use
of home or traditional therapies among mother-infant pairs. HIV testing
of mothers before pregnancy and enrolling households into family health
insurance programmes reduced HEI LTFU. The increased LTFU among children
whose caregivers had reservations in disclosing their child's HIV exposure
status to partners, and those who feared knowing HIV status of their infant
reveals current challenges in sharing personal HIV information with partners
and family members . This may be due to the perceived
or real effects of fear, stigma, and discrimination among mothers living
with HIV. Despite the existence of HIV/AIDS epidemic for over three decades
and common knowledge and widespread information on HIV/AIDS, stigma remains
an important challenge. Mothers in Kenya who are HIV-positive are reluctant
to share their child's or their own HIV results with spouses due to the
possibility of violence, fear of their partners' unexpected reactions, household
conflicts, fear of losing their partners, or the perceived stigma by family,
making them believe they will be ignored, isolated and blamed for the child
ailments . Studies in rural Zambia 
and Malawi had similar findings . The lower proportions
of HIV disclosure to the male partners by the HIV-positive female partners'
highlights reported low male partner involvement which may explain also
the low levels of disclosure and partner testing in various PMTCT programs
in most SSA countries. Findings from Kenya, Malawi, and Ethiopia show that
a majority of male partners are rarely involved in PMTCT programs, likely
due to the non-disclosure by partners [23-25]. To
improve disclosure among HIV-positive mothers, integrated approaches are
needed among stakeholders that target HIV-infected mothers, their partners,
and the general public to raise awareness. Sustained advocacy, communication
and social mobilization activities on disclosure, reducing stigma, risk
reduction behaviors, empowering partners psychosocially and on reducing
fear among the populace on matters HIV and related interventions should
be strengthened . HIV stigma reduction and openness
among HEI caregivers and the community on matters related to HIV can reduce
chances of LTFU. Accordingly, HIV-exposed or infected infants should continuously
access cotrimoxazole prophylaxis, needed antiretroviral and other supportive
HIV care because without this, most infants die before their second birthdays
Parents' lack of knowledge that HEI should receive follow-up care for 18 months
despite initial HIV-negative polymerase chain reaction (PCR) results could
influence a caregiver's decisions on continuing appointments for HEI who
Findings from rural northern Uganda and South Africa demonstrated that HIV-infected
mothers who knew the duration and number of the visits, the reasons for not
missing visits, consequences of missing clinic visits, and the reason why their
infants were being followed-up, more frequently attended clinic appointments
and had successful follow-up outcomes [19
]. A clear understanding
motivates caregivers so that they are aware of the short or long-term potential
benefits of following treatments. A hospital-based case-control study in Cameroon
found that mothers who had no formal education were significantly more likely
to be lost to follow-up with HIV care programs compared to those with formal
Educated mothers have better attitudes and practices concerning their children
and own health. They are more likely to understand clinical concepts and the
language used at healthcare settings. In our study, level of education among
cases and control was not statistically significantly associated with LTFU,
which could have been because we recruited most of our study participants from
referral health facilities serving a cosmopolitan population. It is possible
that language used by health care workers (HCWs) during counselling and educating
mother-infants pairs might be too complex for caregivers to understand. The
patient-HCW communication forms may limit the messages shared with HEI caregivers.
Also, the time taken at consulting clinic may have been short or the caregivers
did not appreciate the messages they receive at the health facilities. We could
not assess these parameters since such variables were not part of our questionnaire.
Another study in Kenya showed that poor perception of the patient-clinician
communication by clients attending HIV services is associated with lower clinic
Mothers who knew and shared their HIV status with their before pregnancy were
less likely to have their infant LTFU. Findings from studies done in Ethiopia
and in other low HIV prevalence settings in Central Asia and Eastern Europe
] showed that knowledge of maternal
HIV prior to pregnancy allows HIV-infected mothers to be better prepared to
receive their infants' test results. It may be that they might have had adequate
time to be taken through counseling and living positively with HIV, hence have
a higher acceptance going forward. There is a higher chance that mothers who
knew their HIV status are more likely to have been better prepared psychologically,
share their own HIV and HEI status with partners and family, belong to support
groups, take maternal ARV prophylaxis, and be more familiar with and adhere
to clinician instructions. In our study, these factors were found to help HEI-mother
pairs to continue attending clinic appointments. Mothers with early knowledge
of their HIV status tend to have better overall health compared to those who
get diagnosed during antenatal, labor and delivery and during post-natal periods.
They learn to adapt and accept to live positively, have greater motivation to
take care for their HEI.
Other studies in South Africa [32
] and Uganda [33
have demonstrated that HIV-infected mothers and their exposed children who have
adequate health information have a lower risk of LTFU. A study in Western Kenya
] and in Malawi [6
] showed that malnourished
HIV exposed or infected children were less likely to attend scheduled visits.
This is consistent with our findings that showed a significant association of
under nutrition with loss to follow up among HEI who had a mid-upper arm circumference
below the accepted baseline for children aged > 6 months. This could explain
some of the health outcomes facing LTFU HEI. The finding on association of under
nutrition and LTFU had limitations; we did not collect data on income, breast
feeding practices, weaning practices, types of food and food security at the
household level. This simple clinical marker, undernutrition, could be useful
for health care workers in predicting HEIs who could easily be lost to follow
up. It remains unknown what happens to HIV-exposed children LTFU within the
household. Mother-HEI pairs might be using traditional home treatments. However,
as a limitation, the study could not determine the magnitude on the use of home
treatment among HEI. The use of home treatments puts HIV-exposed children at
risk of progression of disease, malnutrition, illness and death, even if they
are not HIV-infected. LTFU and the associated use of home treatment could be
demonstrated by the four deaths that were recorded during this study. The four
deaths had not been notified to the health facilities.
Households that had a family health insurance cover were more often compliant
with mother-infant clinic appointments. This finding remains unclear since HIV
services at our study sites were not charged. In addition, since June 2013,
the Government of Kenya waived all maternity related fees [34
We did not expect cost-related factors to be a barrier to not seeking services.
Having a health insurance cover could be a proxy indicator for other socio-economic
determinants, or health-seeking behavioral differences. A systematic review
of over 116 studies in SSA [35
] suggests that social factors
such as lack of income and being unemployed are associated with LTFU. Such social
factors could explain a household's ability to have a health insurance plan.
A study in a pediatric health program in Ghana showed that apart from registering
households into the country's national health insurance scheme and households
benefiting from cash transfer programs, belonging to such programs had a facilitative
role among mothers to continue taking their children to the health facilities
for regular checkups leading to overall improvement of child health indicators
Our study had some limitations; nearly all of the HEI caregivers interviewed were mothers, which prevented us from ascertaining the fathers' role, which might be associated with HEI LTFU.
The scheduling of clinical appointment dates for some HIV-exposed infants within the HEI register was not strictly as per guidelines, especially for infants who were sick or were being followed for other co-morbidities. For example, for ill children scheduled for visits at <3 months of age, misclassification of their true outcome status might occur. Since we recruited study participants from high-volume referral facilities,our findings might not be generalizable. However, recruitment from different centers and the cosmopolitan population of the study participants and the consistency of findings with that of other studies from similar settings highlights the valuable insights that could allow a better understanding of the predictors of HEI loss to follow up. In addition, as strength of this evaluation is that after these HEIs follow-up efforts, the Kenya HIV estimates and the Kenya AIDS Response Progress Report found that Kericho County hadan improvement in maternal ART and, infant ART utilization and a reduction in the number of HEIs LTFU [38
]. These achievements in 2016 occurred simultaneously with innovative HIV strategies within the 2014 UNAIDS 90-90-90 strategy, to better control the HIV epidemic, and other Kenyan specific campaigns which focused on HIV infected women and children.
Caregivers' intrapersonal, interpersonal, community and health system factors remain crucial towards HEI retention. Promoting early HIV testing among mothers, disclosure support, health education, and partner involvement is advocated. Encouraging households to enroll in health insurance could be beneficial. Further studies on the magnitude and the reasons for use of home treatments among caregivers are recommended.
Caregivers' intrinsic, interpersonal, community and health system factors remain crucial towards reducing HEI LTFU. Early HIV testing among mothers, disclosure support, health education, and partner involvement is advocated. Encouraging households to enroll in health insurance could be beneficial. Further studies on the magnitude and the reasons for use of home treatments among caregiver are recommended.
What is known about this topic
- The elimination of HIV infection among HIV-exposed infants is achievable and remains of public health importance globally.
- Loss to follow up of caregivers and their HIV-exposed infants has an impact in elimination of HIV interventions.
What this study adds
- Caregivers' use of traditional medicine continues to significantly contribute to HIV-exposed infant loss to follow up hence hampering HIV elimination targets in Kenya.
- Hospitalised HIV exposed infants (HEIs) are prone to loss to follow up (LTFU), contributing to prevention of mother to child HIV transmission (PMTCT) missed opportunities.
- Social safety nets like encouraging HEI care givers to enrol in health insurance programs may improve retention among HEI and there is need to carry out a quantitative study to determine the magnitude on the use of traditional treatment among HEI.
The authors declare no competing interests.
HK conceptualized and designed the study, collected, analyzed and
interpreted the data. The authors JW, RT, TG, HK and JO developed
initial and subsequent study protocol. Authors TG, HK, JK, JO, SL, BA, BL,
and RT guided the planned investigations. All co-authors reviewed
the draft document. Author HK collated the HEI registers and conducted investigations,
participated in data analysis. All co-authors contributed to the
review of the manuscript, read and approved the final manuscript.
The authors thank the Kericho County government and the County health teams who allowed us to conduct this study within their facilities. Also we thank the facility administrative staffs and the health record officers for availing us the HEI databases and HEI-caregiver files. We sincerely thank the health care professionals for the dedication for care HEIs and their caregivers.
We humbly appreciate the efforts of the study assistants, the defaulter tracer team who helped in data collection and linking back HEI to the health facilities for continued care. Finally, thanks to all study participants who accepted to be part of the study.
Tables and figures
Table 1: socio-demographic characteristics, clinical information of HIV-exposed infants (HEI), Kericho County, Kenya, 2016
Table 2: socio-demographic characteristics, clinical information of the HIV-exposed infants (HEI) Care-givers, Kericho County, Kenya, 2016
Table 3: HIV-exposed infant factors associated with loss to follow up, Kericho County, Kenya, 2016
Table 4: HIV-exposed infant caregiver factors associated with loss to follow up, Kericho County, Kenya, 2016
Figure 1: map of Kericho County showing study facilities, Kenya 2016
Figure 2: selection of HIV-exposed infant cases and controls, Kericho County, Kenya, 2016
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