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Summary data

Summary data to the end of March 2021[1]

A total of 2,212 children were ever reported to CHIPS by the end of March 2021, comprising virtually all of those receiving HIV-related care in the UK from 2006 onwards and those in Ireland from 2006-2018. Overall, 41% were born in the UK or Ireland, 57% were born abroad and 2% unknown. Among the 907 children born in the UK or Ireland, the median age at first presentation was 10 months [interquartile range (IQR) 2, 39 months] and has remained relatively stable over time; 17% did not present to care until ≥5 years of age. Among 1,253 children who were born abroad, the median age at first presentation was 7.9 years [4.6, 11.5] and has increased slightly over time; median age at first presentation was 11.2 [7.2, 13.8] among those first presenting to care in the UK/Ireland since 2010. Since 2015, on average 35[2] (range 27 to 47) newly diagnosed children have been reported each year.

By the end of March 2021, the cumulative number of children known to have died while in paediatric HIV care was 125 (6%), and of these deaths, 104 occurred prior to 2008, eight were in 2008, seven in 2009, three in 2010, two in 2011 and one in 2016. 

Overall, 126 (6%) children were reported to have left the country and 44(2%) were reported as lost to follow up by their clinic. A further 47(2%) were in paediatric care in Republic of Ireland when reporting ended in 2018. To date 1,381 (62%) young people have transferred to adult clinics, with an average of 100 patients transferring each year over the last five years. The median age at transfer has been relatively steady at around 18 years. 489 children remain in follow-up in paediatric care.

The overall rate of hospital admissions in the cohort has continued to decline from 70 admissions per 100 children in follow-up in 2000 to 9 in 2019 and 5 in 2020 (data for 2019 and 2020 subject to reporting delay and may not be complete).

Viral load suppression among antiretroviral therapy (ART) naïve children starting combination ART has improved with calendar year: 41% had suppressed viral load ≤50c/ml[3] at 12 months after start of ART in 2000-2004, increasing to 79% from 2015 onwards. Just over a quarter (26%) of patients had ever progressed to CDC stage C disease and a fifth (21%) to CDC stage B while in paediatric care.

A total of 489 patients were in active follow-up at a paediatric clinic by the end of March 2021. Of these, just over half (58%) were female, 53% were born in the UK or Ireland, 73% were of black ethnicity, and the vast majority (92%) were known to have vertically acquired HIV.

Forty-one per cent of children were being seen at clinics in London, 51% in the rest of England, 5% in Scotland, 2% in Wales, <1% in Northern Ireland. The median age at last visit was 14.8 [12.0, 16.9] years.

Among patients with a follow up visit since January 2019 (n=464), 6 children (1%)[4] were ART naïve, all of whom were aged ≥10 years at time of last visit. Among those prescribed ART at last visit (n=454), 96% were prescribed a ≥3 drug[5] regimen and 4% were prescribed mono or dual therapy. Over half (55%) were on integrase-based regimens and 83% were prescribed a fixed dose combination. The remaining 4 children were off-ART at last visit.

As part of our quality of care indicators reported to NHS England, and based on data for 2018, the following outcomes were observed across all children in the UK:

  • Retention in care: 13 of 16 (81%) children diagnosed in 2018 had≥ 2 CD4 and ≥2 VL measurements within 12 months of diagnosis.
  • Retention on ART: 25 of the 26 (96%) children newly starting ART in 2017 remained on ART 12 months later
  • Immunological status of children aged <5 years: Among 10 children aged <5 years, all were on ART and 8 of 9 (89%) had at least one CD4% ≥25%.
  • Immunological status of children aged ≥5 years: 408 of 446 (91%) children on ART and 26 of 31 (84%) not on ART throughout 2018 had at least one CD4 ≥350 cells/mm3 in 2018.
  • Viral suppression on ART: among all children on ART throughout 2018 (n=469), 421 (90%) had confirmed virological suppression <400 copies/mL and 378 (81%) <50 copies/mL.
  • Viral suppression on ART aged ≥13 years: among those on ART through and 2018 (n=260), 228 (88%) had confirmed virological suppression <400 copies/mL and 199 (77%) <50 copies/mL.

 

 

[1] Numbers are based on forms received rather than children seen to the end of November 2021. CHIPS forms were not sent to clinics for 115 children in 2020 in preparation for handover to ISOSS. 2019/20 data are therefore subject to reporting delay and may be incomplete.

[2] New registrations into CHIPS were stopped in March 2020 in preparation for handover to ISOSS; 10 children were registered in 2020 prior to this. Data for 2020 are not included in the calculation of the median number of registrations.

[3] Viral load ≤ lower limit of detection of the assay if the lower limit was >50 but ≤400c/ml.

[4]At last report 1 patient was ART naïve with controlled VL, 3 naïve due to family wishes/reluctance to start treatment, 2 last seen in CHIPS in 2019 had <2 months follow up in UK paediatric HIV care at last report.

[5]Ritonavir booster not counted as a separate drug