A 17 year experience of attrition from care among HIV infected children in Nnewi South-East Nigeria

Infection with the human immunodeficiency virus (HIV) still presents a serious public health concern particularly among children. Despite efforts to improve services and outcomes of children living with HIV, a large number of children continue to die from HIV annually [1, 2]., Although children less than 15 years old constituted 4.5% of all individuals living with HIV in 2018, they accounted for 13% of the 770,000 deaths attributable to HIV [2]. In 2018, the incidence of HIV-related mortality in children tripled that of adults (5.9% versus 1.9%) [2].

More than 90% of HIV infection in children result from mother-to-child transmission (MTCT) during pregnancy, delivery or postnatally during breastfeeding [3]. Such perinatally acquired HIV is associated with more rapid progression due to immature immune system, and high mortality especially in sub-Saharan Africa [3]. Without any intervention, 50% of prenatally infected children die within their first two years of life. Fortunately, anti-retroviral therapy (ART) has enabled many children to grow into adulthood [3, 4]. However, the success of childhood HIV programmes depends on timely diagnosis, early initiation of treatment, adherence to medications and active follow-up, to ensure optimal outcomes. This is hinged on frequent visits to treatment sites for clinic consultations, laboratory monitoring and ARV drug refill. Due to changing life circumstances, care giver issues and other challenges, many children in developing countries may not meet up with the demands of life-long care and therefore unable to continue enjoying the life-saving benefits of ART. Consequently, the children are faced with high risk of treatment failure, death and HIV transmission [5].

In 2014, the Joint United Nations Programme on HIV/AIDS (UNAIDS) and partners set ambitious 90–90-90 fast-track targets, that 90% of people living with HIV know their status, 90% of people who know their status be on treatment, and 90% of people on treatment be virally suppressed by 2020 [6]. In order to end the AIDS epidemic, these targets were set at 95–95-95 by year 2030 [7]. However, these targets cannot be met if children fail to be retained in care. Children continue to lag behind adults across all cascades, and reports indicate that all paediatric targets set for 2016 were missed [1, 7]. Despite reported scale-up of testing and enrolment services, only about half of HIV-infected children less than 15 years were receiving ART in 2019 [7]. Besides, the confinement measures, restrictions on movement and economic stresses brought by the Covid-19 pandemic may consequentially cause disruption of services and treatment interruptions.

This study was carried out as a consequence, to determine the trend in attrition among children enrolled into the paediatric ART programme in Nnamdi Azikiwe University Teaching Hospital (NAUTH) Nnewi, Nigeria. It is hoped that the findings will provide the needed evidence to drive the adoption of innovative approaches which will ensure retention in care and optimal outcomes among HIV-infected children.

Our findings portray a high attrition rate among children living with HIV. Among children who were referred to the unit, 8.2% did not complete the enrolment process and return for the next visit. Among those who were successfully linked to care, the overall attrition rate was 49.4% with incidence of 108/1000 person years while the 6-, 12-, 24-, and 36-months attrition rates were 20.4, 27.7, 34.3 and 37.5%, respectively. These findings are comparable to reports from similar African studies [12‐19].

The pre-engagement attrition highlights the success of linkage to care. Successful linkage to care requires navigation through post-test counselling, transfer to clinic, enrolment protocols, initial clinical and laboratory evaluation, ART initiation and first follow-up visit. Some of these services may be hindered by health system related factors such as user fees and long waiting time. In addition, as revealed by our findings, many children present with advanced HIV disease and may die before the first follow-up visit. Children are completely dependent on adult caregivers to access care. Therefore, caregiver issues such as status denial, fear of stigmatization, ill health, death and financial constraints could hinder successful linkage to care. Current efforts to address the gap of successful linkage include rapid ART initiation and case management approach [1‐23]. The case management approach ensures that a newly diagnosed HIV positive individual is successfully linked to coordinated health and social services to achieve desired outcomes [24]. This approach is patient centered, an ongoing rather than a one-off process, and responds to the peculiar needs of the client [24]. Although these interventions have been demonstrated to improve successful linkage to care, their implementation should be intensified and monitored to achieve desired results.

The findings of this study are in keeping with previous reports of high attrition rates in West African Paediatric ART Programmes [15, 18, 25]. The West African sub-region has been reported to have the poorest retention in care compared to other parts of the world. In addition, a wide disparity exists between attrition rates in developed and developing countries [26, 27]. Urgent innovative interventions are needed to address the high attrition rates in West Africa in order to achieve the 2030 global targets [7]. Reports consistently show that loss to follow-up constitute majority of attrition among children enrolled in HIV treatment programmes in developing countries [12‐19, 27, 28]. However, this should be interpreted with caution because a significant proportion of loss to-follow up may be actual deaths. This hypothesis was supported by the finding that children who were lost to follow-up shared similar characteristics with those who died and this is substantiated by previous report [29]. The fact that majority of children who were lost to follow-up could not be reached on phone was somewhat disappointing. The inability to reach them could be attributed to loss/replacement of sim cards as well as the multiplicity of individual sim card ownership in the country. This challenge buttresses the need for innovative tracking approach that will ensure efficient real-time tracking, quick re-engagement in care and proper documentation of true outcomes [30]. Adequate funds should be earmarked for tracking down to the household and community levels should phone calls fail as experienced in the index study.

The findings from caregivers who were successfully reached provided insight into the outcomes of children who were lost to follow-up. More than a third died while lost to follow-up (35.3%) or were alive but not in any form of care (38.7%), while a quarter (26.1%) started accessing care at other sites. This reinforces the need for innovative strategies that can identify enrollees who were previously in care or ART experienced to ensure appropriate documentation and reporting of outcomes. The reasons for being lost to follow-up highlight the challenges faced by HIV-infected children and their caregivers. This is buttressed by a Zimbabwean report [31]. Expectedly, most of the issues were caregiver related. Our findings agree with a report which showed that financial constraints pose the commonest barrier to continued engagement in care in developing countries [25]. Although anti-retroviral drugs are free, families may not meet up with the cost of certain services including ancillary laboratory investigations, folder/card fees, treatment of co-morbidities, as well as frequent transportation to and from hospitals. More so, this may be aggravated by the indirect cost of the lifelong sickness on the family. In order to address these challenges, the World Health Organization adopted a public health approach in HIV programmes. This includes task sharing, decentralization and integration of HIV services with other health services and differentiated service delivery (DSD). Task shifting and decentralization of services to peripheral health centers are believed to increase the number of healthcare workers and facilities providing ART services, thereby, bringing services closer to clients’ doorsteps. However, accessing care from a nearby facility may not be acceptable to caregivers due to fear of stigmatization. Therefore, efforts to minimize stigmatization should be intensified to ensure that children are treated in facilities as close as possible to their homes in order to reduce transportation cost.

The differentiated service delivery is a client centered approach that focuses on the preferences, needs and values of clients while reducing unnecessary burden on the healthcare facilities. However, children were not prioritized in the initial scale up of DSD. This was attributed to the fact that children often have age-related clinical issues that may require specialist care or more intensive follow up. For instance, rapid growth during the first two years of life necessitates frequent weight monitoring and weight-based dosage adjustment. However, children above 2 years can benefit from multi month scripting, and family-centered approaches including same-day appointments, duration of ART refills or allowing family member to collect ART refills. DSD has been documented to optimize quality of care, efficiency, client satisfaction and continued engagement in care. Therefore, the application of some DSD models should be explored in paediatric ART programmes. In addition, programmes should adopt child-centered interventions that can step in when HIV-infected children experience complex problems, which have the potential to terminate their treatment. Such interventions may include legal support especially for children in unstable homes, enforcement of legislation against child labour, and economic empowerment for the child’s family. Efforts should be made to ensure that HIV-positive children remain on treatment irrespective of caregiver’s religious belief, death, relocation and financial status. Quality adherence counselling and psychosocial support for the child and family are vital to the success of paediatric ART programmes.

Unexpectedly, the trend in attrition failed to assume a steady decline despite the reported scale up of case identification, linkage to care and treatment monitoring. This may reflect fluctuation in programme funding and treatment policies [1, 5]. Reports consistently show an association between delay in initiation on ART or very young age and high risk of attrition [12, 13, 15, 25, 32‐35]. This justifies the adoption of the “test and treat” and rapid ART initiation approaches [24]. However, the patients should be closely monitoring during the first 6 months of ART since this period has been consistently reported to account for a significant proportion of attrition [12, 13, 15, 25‐27, 32‐35]. The under-fives represent a highly vulnerable population due to rapid disease progression and high risk of death. Hence, this age group should be closely monitored to forestall death or loss to follow-up. Furthermore, programmes should ensure potent age-appropriate regimens and dosages. Our finding that about two-thirds of all children had advanced WHO clinical stage at enrolment agrees with previous African reports [ 13, 17, 25–31]. This calls for intensified efforts at identifying infected pregnant women and linking them to prevention of MTCT programmes as well as early infant diagnosis.

The association between attrition and having parent(s) as caregiver agrees with previous reports [13, 31]. This may not be unconnected with the fact that the parent(s) may be sick or die eventually, may be in denial of status, or experiencing financial difficulties due to ill health. These may explain the high attrition also recorded in adult ART programmes [36, 37]. Therefore, parents need adequate support to enable them remain alive and healthy, and to continue to take care for their infected children. Surprisingly, only one out of 13 children who had elder sibling as caregiver died and none was lost to follow-up. Programmes can explore the possibility of engaging elder siblings as secondary caregivers or primary caregivers in the event of loss of parent(s), rather than transferring care to other family members or non-family members thereby increasing the risk of attrition.

The Paediatric HIV treatment programme in Nnewi, Nigeria recorded a high rate of attrition which was mostly due to loss to follow-up. Most children lost to follow-up could not be reached on phone. Major reasons for being lost to follow-up were financial constraints, loss of caregiver, claim to divine healing, family disharmony, child custody issues, and relocation of family or child. Predictors of attrition were advanced HIV disease, young age at enrolment, delay in initiating ARVs, primary caregiver, and period of enrolment.

HIV treatment service delivery should be tailored to the needs of the child and his/her family. Efforts should be intensified at early diagnosis, successful linkage to care and effective implementation of the “test and treat” strategy. Innovative child centered approaches and interventions should be adopted to enable the HIV-infected child continue treatment despite challenges which have the potential to truncate treatment. Removal of user fees and re-activation of home-visit as a component of tracking are recommended.