Long-term follow-up of uninfected children born to HIV-infected women and exposed to antiretroviral therapy: survey of parents’ and health professionals’ views

Hankin, Claire; Newell, Marie‐Louise; Tookey, P

doi:10.1080/09540120701203287

Cited by 8 publications

(8 citation statements)

References 16 publications

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“…[46] Of particular interest, is the relationship between a parent’s disclosure of their illness or HIV status and an HIV-E infant’s access to healthcare services, psychosocial adjustment and resilience. [46,47] Non-disclosure of a parent’s HIV status is associated with increased levels of depression and anxiety among HIV affected children. [48,49]…”

Section: Long-term Impact Of Hiv Exposure On Infant and Childhoodmentioning

confidence: 99%

HIV-exposed infants

Sugandhi

Rodrigues

Kim

et al. 2013

Aids

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Summary Each year over a million infants are born to HIV infected mothers though with scale up of prevention of mother to child transmission (PMTCT) interventions, only 210,000 of the 1.3 million infants born to mothers with HIV/AIDS in 2012 became infected. Current programmatic efforts directed at infants born to HIV-infected mothers are primarily focused on decreasing their risk of infection, but this emphasis on maternal interventions has meant follow-up of exposed infants has been poor. Programs are struggling to retain this population in care until the end of exposure, typically at the cessation of breastfeeding, between 12 and 24 months of age. But HIV exposure is a life-long condition that continues to impact the health and well-being of a child long after exposure has ended. A better understanding of the impact of HIV on exposed infants is needed and new programs and interventions must take into consideration the long-term health needs of this growing population. The introduction of lifelong treatment for all HIV-infected pregnant women is an opportunity to rethink how we provide services adapted for the long-term retention of mother-infant pairs.

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Section: Long-term Impact Of Hiv Exposure On Infant and Childhoodmentioning

confidence: 99%

HIV-exposed infants

Sugandhi

Rodrigues

Kim

et al. 2013

Aids

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“…Regrettably, areas where high numbers of HIV/ARV-exposed pregnancies occur are also areas where healthcare, research and public health resources may be the most constrained. Despite the lack of consensus on the type of monitoring which HEU children merit, there does appear to be general agreement that some form of follow-up of HEU children is warranted [26] for the following reasons: 1) The type and timing of ARV exposures continue to evolve, at times outpacing research, making continued surveillance essential, 2) There are still many unknowns regarding long-term effects of this exposure. Given this, we now outline arguments in favour of and against disclosing perinatal HIV/ARV exposure status.…”

Section: Discussionmentioning

confidence: 99%

“…Data on long-term reproductive health effects, immunologic dysfunction, risk of adult onset malignancies, cardiovascular disease, or neurodevelopmental and mental health disorders in adulthood are still inconclusive with no published reports in HEU adults. To meet this void of evidence, research and longterm monitoring likely needs to be continued, and there is Any malignancy 4 cases of cancer in 3087 HIV-exposed children general consensus among health professionals and parents of HEU children that more data need to be collected on the longterm health of HEU individuals [26]. Research methods using anonymized surveillance systems linked to other national registries will prove indispensable as data are gathered to understand whether in utero HIV/ARV exposure may result in long-term harm, but prospective research cohorts evaluating this question will need to contend with the need for disclosure to HEU individuals in order to continue long-term follow-up into adulthood Á a conundrum where the rationale for the research clashes with the reasons for not mandating universal disclosure at present.…”

Section: Conclusion: To Disclose or Not To Disclosementioning

confidence: 99%

Disclosing in utero HIV/ARV exposure to the HIV‐exposed uninfected adolescent: is it necessary?

Jao

Hazra

Mellins

et al. 2016

Journal of the International AIDS Society

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IntroductionThe tremendous success of antiretroviral therapy has resulted in a diminishing population of perinatally HIV-infected children on the one hand and a mounting number of HIV-exposed uninfected (HEU) children on the other. As the oldest of these HEU children are reaching adolescence, questions have emerged surrounding the implications of HEU status disclosure to these adolescents. This article outlines the arguments for and against disclosure of a child's HEU status.DiscussionDisclosure of a child's HEU status, by definition, requires disclosure of maternal HIV status. It is necessary to weigh the benefits and harms which could occur with disclosure in each of the following domains: psychosocial impact, long-term physical health of the HEU individual and the public health impact. Does disclosure improve or worsen the psychological health of the HEU individual and extended family unit? Do present data on the long-term safety of in utero HIV/ARV exposure reveal potential health risks which merit disclosure to the HEU adolescent? What research and public health programmes or systems need to be in place to afford monitoring of HEU individuals and which, if any, of these require disclosure?ConclusionsAt present, it is not clear that there is sufficient evidence on whether long-term adverse effects are associated with in utero HIV/ARV exposures, making it difficult to mandate universal disclosure. However, as more countries adopt electronic medical record systems, the HEU status of an individual should be an important piece of the health record which follows the infant not only through childhood and adolescence but also adulthood. Clinicians and researchers should continue to approach the dialogue around mother–child disclosure with sensitivity and a cogent consideration of the evolving risks and benefits as new information becomes available while also working to maintain documentation of an individual's perinatal HIV/ARV exposures as a vital part of his/her medical records. As more long-term adult safety data on in utero HIV/ARV exposures become available these decisions may become clearer, but at this time, they remain complex and multi-faceted.

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“…Issues of confidentiality and lack of staff resources were also raised in a survey of parents' and health professionals' views on the acceptability of different ways to monitor ART-exposed children over the longer term (Hankin et al, 2007a). Our experience indicates that consented opportunistic clinic-based follow-up is not a practical approach for monitoring ART-exposed uninfected children in the UK over the long term, and alternative strategies need to be developed.…”

Section: Similar Difficulties In Recruiting Hiv-exposed Uninfected Chmentioning

confidence: 95%

In utero exposure to antiretroviral therapy: feasibility of long-term follow-up

et al. 2009

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Most uninfected children born to diagnosed HIV-infected women in the United Kingdom (UK) are exposed to antiretroviral therapy (ART) in utero and neonatally, and concerns exist about potential adverse effects of such exposure. We explored the feasibility of using national clinic-based follow-up to investigate the association between ART exposure and adverse health events occurring after the neonatal period. (33.5%) were enrolled in CHART; parents of 4.8% (100/2104) declined, 2.8% (59/2104) had gone abroad, 21.6% (455/2104) were not contactable, and the remaining 37.3% (786/2104) were not enrolled mainly because of lack of clinic resources or unwillingness of health professionals to approach the families.Demographic characteristics and type of ART exposure for enrolled and non-enrolled children were similar. Latest information on enrolled children was available at a median age of 24 months. Minor childhood ailments were reported in the majority of children, febrile seizures in 1.6% (11/704), and major health problems in 3.8% (27/704). It was 3 reassuring that prevalence of these outcomes was within UK norms, but numbers were small and duration of follow-up was limited.The difficulties encountered in enrolling and retaining children in this study indicate that comprehensive clinic-based follow-up of ART-exposed uninfected children is not practical. Alternative approaches are required; a robust, secure data linkage protocol would provide a more feasible and sustainable system for long term monitoring of in utero ART exposure.4

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Long-term follow-up of uninfected children born to HIV-infected women and exposed to antiretroviral therapy: survey of parents’ and health professionals’ views

Cited by 8 publications

References 16 publications

HIV-exposed infants

HIV-exposed infants

Disclosing in utero HIV/ARV exposure to the HIV‐exposed uninfected adolescent: is it necessary?

In utero exposure to antiretroviral therapy: feasibility of long-term follow-up

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