‘Don't forget the children’ – test before it is too late

Abstract

In 2009, ‘Don’t forget the children’ guideline recommended that all new HIV-positive patients attending adult HIV services should have any existing children identified and tested for HIV alongside a coherent documentation process. A retrospective case note review was performed on 173 HIV-positive women registered at the Royal South Hants adult HIV service until 31 January 2014. Data were assessed as a whole (n = 173) and, in addition, two comparator groups were formulated: (a) pre-guidelines (n = 108) and (b) post-guidelines (n = 65). Out of 80 children eligible for HIV testing, only 43 (54%) had clear documentation of a test result, and in the remaining 37 (46%), it was either not considered or not followed through. Documentation of need for testing increased significantly from 67% in pre-guideline group to 100% in the post-guideline group (p < 0.001). The median time from recognition of need to test to actual testing remained 24 months in both groups. Although this audit demonstrated improvement in identification of at-risk children and their testing, there is still need for improvement.

Keywords

HIV testing children mothers screening mother-to-child transmission AIDS guideline

Introduction

Through a combination of HIV testing, treatment, choice of delivery method and alternatives to breastfeeding vertical transmission of HIV has been virtually eradicated in the UK. However, many of the women in our care are born outside the UK (45%) and may well have had undiagnosed HIV during pregnancies abroad.¹ It is estimated that children born to such mothers have a 27% chance of HIV transmission.² Ninety per cent of these children present within the first two years and the remaining become symptomatic with life-threatening AIDS-related illnesses in teens and early twenties.³ This necessitates the need to test children at the earliest opportunity when maternal HIV status is confirmed. In 2009, British HIV Association published guideline ‘Don’t Forget the Children’ in relation to HIV testing for children with HIV-positive parents.³

Methods

A retrospective review of notes was carried out on all HIV-positive women registered at the Royal South Hants Hospital between 1 January 2000 and 31 January 2014. The sample was divided into two groups based on when women were registered with the service: (a) pre-guideline: 1 January 2000–31 January 2009 and (b) post-guideline: 1 February 2009–31 January 2014. Data collected included obstetric history, details of children, their age, country of residence and any documented HIV testing.

Results

In total, notes for 173 HIV-positive women were audited, which identified 233 children. Data were assessed as a whole and, in addition, two comparator groups were formulated: pre-guideline (n = 108) and post-guideline (n = 65).

Are all children in need of urgent testing being tested?

Of the 233 children identified, 144 were <18 years (62%), 60 were >18 years (26%), and there was no documentation of age in 29 children (12%). Of the children known to be <18 years old, 80 (55%) were UK resident, 49 (34%) were non-UK resident and for 15 children there was no documentation of residence. Amongst the children resident in the UK (n = 80), 12 (15%) were identified as not at risk due to maternal HIV-negative test near the time of birth of the child. This identified 68 children who were UK resident and, thus, definitely at risk when mother was assessed in the clinic. Fifteen children (<18 years old) whose residence was not documented and 29 children, whose age was not documented, could potentially also be children at risk and, therefore, in need of urgent testing. Adding these to the 68 children definitely known to be at risk would take up the total number of children potentially at risk to 112.

Of the 68 children identified as definitely at risk, HIV status was already known for 13 children (13/68 = 19%), and 30 children (30/68 = 44%) were referred for testing by the department and the results documented in notes. In the remaining 25 children, 10 had no documentation of discussion about HIV testing and in 15 there was documentation of discussion but no documentation of actual referral for testing or HIV result. Overall, HIV test results were known in 63% (43/68) children.

Of the 15 children who were definitely at risk with no documentation of a referral for testing in maternal notes, 8 are now >18 years old, 2 are no longer resident in UK, 1 was born when mother was registered with a different HIV service and 4 children require further review to explore, if testing has been initiated by general practice or paediatrics. These results are illustrated in Figure 1.

Figure 1.

Flowchart summarising HIV testing in children of HIV-positive women.

Have the 2009 ‘Don’t forget the children’ guideline made an impact on practice?

Of the total 173 paper notes audited, 108 women were identified pre-guideline and 65 were post-guideline. These two data groups relate to patients entering the service before and after the release of the ‘Don’t forget the children’ guideline. Comparisons of data from the two groups are represented in Table 1.

Table 1.

Comparison of results between the pre-guideline and the post-guideline groups.

	Pre-guidelines	Post-guidelines	p
Number of women in sample	108	65
Partial/no obstetric history	26 (24%)	12 (18%)	0.443
Offspring identified from notes	140	93
Offspring <18 UK resident at time of clerking	46	34
Offspring <18 resident in UK – testing offspring discussed and documented	31 (67%)	34 (100%)	<0.001
Referral by service for child testing	13	17
Outcome of test	1 Positive 12 Negative	17 Negative
Range of time from clerking to testing	3 Months–9 years	3 Months–2 years 6 months
Median time to testing	24 Months	24 Months

There was a significant increase in cases where discussion regarding HIV testing for children was undertaken from 67% (pre) to 100% (post) introduction of the guideline (p < 0.001). The median time from entry to HIV services of the mother to testing of the child has remained constant at 24 months. Although the quality of documentation of obstetric history improved, indicated by a drop in the proportion with poor obstetric history from 24% (pre) to 18% (post), this was not statistically significant (p = 0.443). Actual testing of at-risk children improved from 42% (13/31) to 50% (17/34), but this was not statistically significant.

Discussion

The results of the audit indicate that practice around child testing and its documentation in our adult HIV service has improved since 2009. This is shown by an increase in discussion and documentation from 67% to 100% suggesting that clinical staff is more aware of issues around child testing and disclosure. The clinic has seen an increase in paediatric referrals for testing from 42% to 50%, which implies that discussion and follow through to testing have also increased.

Median time from referral to testing for children remained constant at 24 months in both groups, which is significantly longer than the guideline target of 6–12 months. Potential reasons could be parental perception of low risk if children are in good health and resistance to child testing due to fear of disclosure of maternal status, particularly if the children are older.⁴

Although the results indicate that 69 out of 112 children potentially at risk had no documentation of HIV testing, this may not be entirely accurate. Fifteen children, where residence is not documented, may not be living in the UK. No documentation of age could be because the children have grown up and mothers no longer consider them potentially at risk. Where there is no documentation of referral for testing, it may be that the referral was sent but not documented in maternal notes or following verbal discussion with the mother, the clinician felt a referral was not necessary. This audit highlights the need to clearly document such decisions. Also, a negative test at the time of the birth/antenatal screening is not enough to exclude mother-to-child transmission risk.

Limitations of the study

The main limitation of this study is that only paper notes and an excel logbook of children tested were used for data collection. We could not check results for HIV testing of children who were looked after in neighboring Trusts. Reliance on documentation in maternal notes may not necessarily reflect actual testing of all children in need of HIV testing.

Conclusion

This audit highlights that testing of children of HIV-positive mothers is proactively considered and improving in our service since the introduction of ‘Don’t forget the children’ guideline. However, there is an unmet need in actual testing of all the identified at-risk children within the stipulated time frame given in the guideline. To improve practice in these areas, we have amended our electronic patient history template to capture complete obstetric history and children’s details. We have a flow chart for testing children of HIV-positive mothers along with expected timescales in line with the guideline (see online Supplementary Material). We plan to conduct this audit regularly in the future with a built-in six-monthly look-back exercise to assess engagement of mothers with the service and follow through on HIV results for their children.

Footnotes

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

References

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Brocklehurst P and Volmink J. Antiretrovirals for reducing the risk of mother-to-child transmission of HIV infection. Cochrane Database Syst Rev 2002; 1: CD003510.

BHIVA, CHIVA and BASHH. ‘Don't forget the children' Guidance for the HIV testing of children with HIV positive parents. British HIV Association, www.bhiva.org/documents/Publications/DFTC.pdf (2009, accessed 1 July 2016).

UNAIDS. World AIDS day report – results, www.unaids.org/sites/default/files/media_asset/JC2434_WorldAIDSday_results_en_1.pdf (2012 accessed 1 July 2016).