Monitoring death and cancer in children born to HIV-infected women in England and Wales: use of HIV surveillance and national routine data

Hankin, Claire; Lyall, Hermione; Peckham, Catherine; Tookey, P

doi:10.1097/qad.0b013e3280b01822

Cited by 25 publications

(18 citation statements)

References 9 publications

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“…The UK also has a national surveillance system of HIV-infected pregnant women and their infants (National Study of HIV in Pregnancy and Childhood, or NSHPC), which follows HEU children up to 18 months. National death and cancer event data in the UK have, in turn, been linked to data in the NSHPC to monitor death and cancer rates in HEU children [22,23]. In more resource-constrained settings, such as South Africa and Thailand, national guidelines recommend routine follow-up of HEU infants until approximately 18 months [24,25].…”

Section: Discussionmentioning

confidence: 99%

“…Therefore, to avert the potential for major physical harm such as in the case of diethylstilboestrol exposure, disclosure is necessary in order to properly monitor HEU individuals into adulthood. Second, one could argue that in addition to childhood malignancies [16,17,23,36,37], there are a myriad of concerning data already surrounding malignancies as well as the mitochondrial [38–44], mental [45–47], bone [48–51], cardiovascular [52–54] and metabolic [55–57] health in HEU children as described herein.…”

Section: Discussionmentioning

confidence: 99%

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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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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

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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“…Likewise, a study in the United Kingdom that linked data from the National Study of HIV in Pregnancy and Childhood to records of the National Health Service found no cases over a period of 7013 person-years (median: 2.5 years/person, range: 1.0–5.0). 22 …”

Section: Discussionmentioning

confidence: 99%

“…There were no cases of cancer identified in the first years of follow-up of infant participants in PACTG 076 20 or in a collaborative study from the Women and Infants Transmission Study and PACTG 219. 21 Larger studies with longer follow-up of HIV-exposed, ARV-exposed HIV-uninfected children found either no cases of cancer 22 or rates of cancer statistically indistinguishable from the rate in the general population. 23,24 To investigate cancer risk over a longer period, we conducted a match between New Jersey's surveillance data among HIV-exposed, ARV-exposed children and the State Cancer Registry.…”

Section: Introductionmentioning

confidence: 99%

Cancer Among Children With Perinatal Exposure to HIV and Antiretroviral Medications—New Jersey, 1995–2010

Ivy

Nesheim

Paul

et al. 2015

JAIDS Journal of Acquired Immune Deficiency Syndromes

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Background Concerns remain regarding the cancer risk associated with perinatal antiretroviral (ARV) exposure among infants. No excessive cancer risk has been found in short-term studies. Methods Children born to HIV-infected women (HIV-exposed) in New Jersey from 1995 to 2008 were identified through the Enhanced HIV/AIDS Reporting System and cross-referenced with data from the New Jersey State Cancer Registry to identify new cases of cancer among children who were perinatally exposed to ARV. Matching of individuals in the Enhanced HIV/AIDS Reporting System to the New Jersey State Cancer Registry was conducted based on name, birth date, Social Security number, residential address, and sex using AutoMatch. Age- and sex-standardized incidence ratio (SIR) and exact 95% confidence intervals (CIs) were calculated using New Jersey (1979–2005) and US (1999–2009) cancer rates. Results Among 3087 children (29,099 person-years; median follow-up: 9.8 years), 4 were diagnosed with cancer. Cancer incidence among HIV-exposed children who were not exposed to ARV prophylaxis (22.5 per 100,000 person-years) did not differ significantly from the incidence among children who were exposed to any perinatal ARV prophylaxis (14.3 per 100,000 person-years). Furthermore, the number of cases observed among individuals exposed to ARV did not differ significantly from cases expected based on state (SIR = 1.21; 95% CI: 0.25 to 3.54) and national (SIR = 1.27; 95% CI: 0.26 to 3.70) reference rates. Conclusions Our findings are reassuring that current use of ARV for perinatal HIV prophylaxis does not increase cancer risk. We found no evidence to alter the current federal guidelines of 2014 that recommend ARV prophylaxis of HIV-exposed infants.

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“…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. Paediatric reports to the NSHPC are now linked to routine cancer and death data collected by the Office for National Statistics for long term monitoring; although this approach is limited to specific outcomes, it demonstrates the feasibility and potential of data linkage (Hankin et al, 2007b).…”

Section: Similar Difficulties In Recruiting Hiv-exposed Uninfected Chmentioning

confidence: 99%

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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Monitoring death and cancer in children born to HIV-infected women in England and Wales: use of HIV surveillance and national routine data

Cited by 25 publications

References 9 publications

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

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

Cancer Among Children With Perinatal Exposure to HIV and Antiretroviral Medications—New Jersey, 1995–2010

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

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