Data from the Collaborative HIV Paediatric Study (CHIPS) Reports - - PowerPoint PPT Presentation

Data from the Collaborative HIV Paediatric Study (CHIPS) Reports up to March 2020*

* Numbers are based on reports received rather than children seen to the end of March 2020. 2019 data are subject to reporting delay and may therefore be incomplete.

Background to CHIPS

• The Collaborative HIV Paediatric Study (CHIPS) was

established in April 2000 as a multi-centre cohort study

• f children with HIV in the UK and Ireland.
• The collaboration is between

– 37 clinics1 in the UK and Ireland have provided care for children with HIV since January 2018, – the National Surveillance of HIV in Pregnancy and Childhood (NSHPC), and – the MRC Clinical Trials Unit

1 These are the main clinics where patients are seen, and which report data directly to CHIPS

Follow-up status of 2210 children enrolled in CHIPS

547 47 125 43 1324 124

200 400 600 800 1000 1200 1400 Still in CHIPS follow-up Exited CHIPS (RoI only)* Left country Lost to follow-up Transferred to adult care Died** Number of children

*Clinics in the Republic of Ireland last reported data to CHIPS in March 2018 at which time there were 47 children in paediatric care for whom current status is unknown. **Deaths in paediatric care: 104 deaths prior to 2008, 8 in 2008, 7 in 2009, 2 in 2010, 2 in 2011, 1 in 2016.

Age of UK/ Irish cohort of patients with HIV acquired in childhood by grouped calendar year

(N=2207*)

* Includes all children (those still in follow-up and those who have died, lost to follow-up, left the UK & Ireland or transferred to adult care), excluding 3 who are missing date first presented to medical services. Republic of Ireland ceased reporting in 2018; no new cases in Ireland are included from that date onwards.

Age at presentation Up to 2014 2015 2016 2017 2018+ Total At birth 204 (10%) 2 (7%) 2 (9%) 3 (14%) 0 (0%) 211 (10%) <1 year 313 (15%) 1 (3%) 0 (0%) 1 (5%) 3 (8%) 318 (14%) 1-4 years 569 (27%) 5 (17%) 3 (13%) 5 (23%) 8 (22%) 590 (27%) 5-9 years 553 (26%) 14 (48%) 6 (26%) 3 (14%) 3 (8%) 579 (26%) 10-14 years 409 (20%) 6 (21%) 9 (39%) 7 (32%) 15 (42%) 446 (20%) ≥15 years 49 (2%) 1 (3%) 3 (1%) 3 (14%) 7 (19%) 63 (3%) Total 2097 (100%) 29 (100%) 23 (100%) 22 (100%) 36 (100%) 2207 (100%)

Age of UK/Irish cohort of patients with HIV acquired in childhood, 1996-2019

Note: Data are for all children and young people alive who ever presented to medical services in the UK/Ireland by the mid-point of the two year window, including children who have since transferred to adult care; those who subsequently died or were lost to follow-up are excluded from the year of death or loss to follow-up. All paediatric patients included, from date of first presentation to medical services in the UK, regardless of mode of acquisition (91% perinatal). CHIPS includes all diagnosed HIV-infected children known to be living in the UK/Ireland, of whom 58% were born abroad. Data for 2018-19 are incomplete as subject to reporting delay. Republic of Ireland ceased reporting in 2018; those reported up to that date are included here.

Age group Year No Median age (IQR) <1 year 1-4 years 5-9 years 10-14 years 15-19 years 20+ years 1996-97 334 5 (2-7) 19(6%) 139(42%) 139(42%) 36(11%) 1(0%) 0(0%) 1998-99 456 6 (3-8) 17(4%) 161(35%) 194(43%) 75(16%) 9(2%) 0(0%) 2000-01 630 7 (4-10) 22(3%) 178(28%) 252(40%) 140(22%) 37(6%) 1(0%) 2002-03 834 8 (5-11) 21(3%) 175(21%) 338(41%) 222(27%) 74(9%) 4(0%) 2004-05 1109 9 (6-13) 18(2%) 187(17%) 402(36%) 345(31%) 139(13%) 18(2%) 2006-07 1328 10 (7-14) 19(1%) 149(11%) 432(33%) 433(33%) 248(19%) 47(4%) 2008-09 1509 12 (8-15) 16(1%) 131(9%) 370(25%) 536(36%) 351(23%) 105(7%) 2010-11 1646 13 (10-17) 8(0%) 97(6%) 289(18%) 589(36%) 445(27%) 218(13%) 2012-13 1747 15 (11-19) 7(0%) 48(3%) 234(13%) 517(30%) 590(34%) 351(20%) 2014-15 1817 17 (13-20) 3(0%) 35(2%) 171(9%) 419(23%) 641(35%) 548(30%) 2016-17 1859 19 (15-22) 2(0%) 20(1%) 121(7%) 302(16%) 629(34%) 785(42%) 2018-19 1888 20 (16-24) 0(0%) 26(1%) 62(3%) 247(13%) 501(27%) 1052(56%)

0% 20% 40% 60% 80% 100%

1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019

<1 year 1-4 years 5-9 years 10-14 years 15-19 years 20+ years

Age of UK/Irish cohort of patients with HIV acquired in childhood, 1996-2019

N= 334 384 456 526 630 732 834 981 1109 1220 1328 1426 1509 1585 1646 1707 1747 1789 1817 1839 1859 1875 1888 1896

Note: Data are for all children and young people alive who ever presented to medical services in the UK/Ireland, including children who have since transferred to adult care; those who subsequently died or were lost to follow-up are excluded from the year of death or loss to follow-up. All paediatric patients included, from date of first presentation to medical services in the UK, regardless of mode of acquisition (91% perinatal). CHIPS includes all diagnosed HIV-infected children known to be living in the UK/Ireland, of whom 58% were born abroad. Data for 2019 are incomplete as subject to reporting delay. Republic of Ireland ceased reporting in 2018; those reported up to that date are included here.

Note: Data are for all children and young people alive who were ever in paediatric follow-up at the midpoint of the two year window; those who subsequently died or were lost to follow-up or transferred to adult care are excluded from the year this happened onwards. All paediatric patients are included, from date of first follow up in paediatric care reported in CHIPS, regardless of mode of acquisition (91% perinatal). CHIPS includes all diagnosed HIV-infected children known to be living in the UK/Ireland, of whom 58% were born abroad. Data for 2018-19 are incomplete as subject to reporting delay. Republic of Ireland ceased reporting in 2018; young people in Ireland are excluded from date of last report to CHIPS.

Age of UK/Irish cohort of patients with HIV acquired in childhood & in paediatric follow-up, 1996-2019

Age group Year No Median age (IQR) <1 year 1-4 years 5-9 years 10-14 years 15-19 years 20+ years 1996-97 281 5 (3-8) 7(2%) 114(41%) 125(44%) 34(12%) 1(0%) 0(0%) 1998-99 430 6 (3-9) 15(3%) 146(34%) 187(43%) 75(17%) 7(2%) 0(0%) 2000-01 596 7 (4-10) 16(3%) 170(29%) 241(40%) 135(23%) 34(6%) 0(0%) 2002-03 775 8 (5-11) 15(2%) 162(21%) 324(42%) 215(28%) 59(8%) 0(0%) 2004-05 1022 9 (6-12) 13(1%) 173(17%) 392(38%) 336(33%) 105(10%) 3(0%) 2006-07 1179 10 (6-13) 11(1%) 140(12%) 419(36%) 421(36%) 187(16%) 1(0%) 2008-09 1278 11 (8-14) 14(1%) 119(9%) 358(28%) 526(41%) 257(20%) 4(0%) 2010-11 1293 12 (9-15) 7(1%) 91(7%) 284(22%) 580(45%) 326(25%) 5(0%) 2012-13 1236 13 (10-15) 6(0%) 47(4%) 228(18%) 510(41%) 433(35%) 12(1%) 2014-15 1124 14 (11-16) 2(0%) 35(3%) 165(15%) 415(37%) 481(43%) 26(2%) 2016-17 935 15 (11-17) 2(0%) 19(2%) 120(13%) 298(32%) 468(50%) 28(3%) 2018-19 724 15 (12-17) 0(0%) 23(3%) 62(9%) 244(34%) 361(50%) 34(5%)

0% 20% 40% 60% 80% 100%

1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019

<1 year 1-4 years 5-9 years 10-14 years 15-19 years 20+ years

N= 281 345 430 501 596 674 775 910 1022 1099 1179 1234 1278 1304 1293 1306 1236 1202 1124 1028 935 840 724 602

Age of UK/Irish cohort of patients with HIV acquired in childhood & in paediatric follow- up, 1996-2019

Note: Data are for all children and young people alive who were ever in paediatric follow-up from 1996 onwards; those who subsequently died or were lost to follow-up or transferred to adult care are excluded from the year this happened onwards. All paediatric patients are included, from date of first follow up in paediatric care reported in CHIPS, regardless of mode of acquisition (91% perinatal). CHIPS includes all diagnosed HIV- infected children known to be living in the UK/Ireland, of whom 58% were born abroad. Data for 2019 are incomplete as subject to reporting

• delay. Republic of Ireland ceased reporting in 2018; young people in Ireland are excluded from date of last reported to CHIPS.

Hospital admissions, 2000-2019

Retrospective data on admissions not collected for children from clinics joining since Aug 2003. These children are counted from when they began prospective follow-up at a CHIPS clinic. Admissions may be underreported for children in shared care where only information from the main CHIPS follow-up clinic is reported. Data for 2019 are subject to reporting delay and may be incomplete. Republic of Ireland ceased reporting in 2018; young people in Ireland are excluded are excluded from date of last report to CHIPS. 10 20 30 40 50 60 70 80 90 100 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 Admission rate (per 100 person-years)

Percentage of children in follow-up admitted at least once each year

Children in f/up: 494 598 673 793 936 1079 1167 1204 1257 1281 1272 1273 1207 1168 1086 990 912 813 661 495 Children admitted: 145 153 149 163 162 164 157 139 145 111 103 111 76 70 62 54 42 40 20 17 Total admissions: 286 276 235 283 257 263 236 203 207 141 148 153 93 88 89 68 64 63 26 22

1 Response is based on the viral load value nearest 12 months (+/-3 months) after cART initiation 2 Defined as: first combination ART composed of 3 or more drugs across two classes (excluding un-boosted PI) or 3NRTIs including ABC 3 57/734 (8%) of undetectable results had a lower limit of detection >50 but ≤400c/ml 4 15/890 (2%) of undetectable results had a lower limit of detection >200 but ≤400c/ml Republic of Ireland ceased reporting in 2018; young people in Ireland are excluded are excluded from date of last report to CHIPS.

Viral load suppression 12 months1 after starting cART naïve2, all ages

N=1174 with measurements available since 2000

Year Viral load (copies/ml) ≤50 or ≤lower assay limit3 ≤200 or ≤lower assay limit4 Total 2000-2004 124 (41%) 186 (62%) 299 2005-2009 275 (63%) 335 (77%) 435 2010-2014 225 (75%) 247 (82%) 300 2015- 110 (79%) 122 (87%) 140 Total 734 (63%) 890 (76%) 1174

1 Response is based on the viral load value nearest 12 months (+/-3 months) after cART initiation 2 Defined as: first combination ART composed of 3 or more drugs across two classes (excluding un-boosted PI) or 3NRTIs including ABC 3 44/515 (9%) of undetectable results had a lower limit of detection >50 but ≤400c/ml 4 12/646 (2%) of undetectable results had a lower limit of detection >200 but ≤400c/ml Republic of Ireland ceased reporting in 2018; young people in Ireland are excluded are excluded from date of last report to CHIPS.

Viral load suppression 12 months1 after starting cART naïve2 at age ≤12 years

N=869 with measurements available since 2000

Year Viral load (copies/ml) ≤50 or ≤lower assay limit3 ≤200 or ≤lower assay limit4 Total 2000-2004 111 (41%) 168 (62%) 271 2005-2009 214 (62%) 266 (77%) 346 2010-2014 131 (74%) 144 (81%) 177 2015- 59 (79%) 68 (91%) 75 Total 515 (59%) 646 (74%) 869

1 Response is based on the viral load value nearest 12 months (+/-3 months) after cART initiation 2 Defined as: first combination ART composed of 3 or more drugs across two classes (excluding un-boosted PI) or 3NRTIs including ABC. 3 13/219 (6%) of undetectable results had a lower limit of detection >50 but ≤400c/ml 4 3/236 (1%) of undetectable results had a lower limit of detection >200 but ≤400c/ml Republic of Ireland ceased reporting in 2018; young people in Ireland are excluded are excluded from date of last report to CHIPS.

Viral load suppression 12 months1 after starting cART naïve2 at age ≥13 years

N=305 with measurements available since 2000

Year Viral load (copies/ml) ≤50 or ≤lower assay limit3 ≤200 or ≤lower assay limit4 Total 2000-2004 13 (46%) 18 (64%) 28 2005-2009 61 (69%) 69 (78%) 89 2010-2014 94 (76%) 103 (84%) 123 2015- 51 (78%) 54 (83%) 65 Total 219 (72%) 244 (80%) 305

Time to viral suppression (viral load ≤50c/ml

• r lower limit of detection) in children starting

cART naïve (since 2000) by age at cART.

Time to viral suppression (viral load ≤50c/ml

• r lower limit of detection) in children starting

cART naïve (since 2000) by year of cART.

Time to viral rebound (>1000c/ml) for children suppressing viral load ≤50c/ml (or lower limit

• f detection) within 12 months of starting

cART naïve by age at cART.

Time (years) since first VL≤50c/m

Time to viral rebound (>1000c/ml) for children suppressing viral load ≤50c/ml (or lower limit

• f detection) within 12 months of starting

cART naïve by year of cART.

Time (years) since first VL≤50c/m

1 Response is based on viral load value closest to 12 months (+/-3 months) after starting 1st/ 2nd line, for those starting cART naive and remaining on 1st line for at least 12 months and 2nd line for at least 12 months. 2 Defined as change in drug class, addition of new drug class, change/addition of PI drug, addition of second NNRTI or switch to a 3NRTIs including ABC regimen. 3 171/852 had missing viral load after 12 months on 1st line, and 209/852 had missing viral load after 12 months on 2nd line. 4 35/376 (9%) undetectable results had a lower limit of detection >50 but ≤400c/ml and 19/448 (4%) were >200 but ≤400c/ml. 5 14/467 (3%) undetectable results had a lower limit of detection >50 but ≤400c/ml and 3/412 (1%) were >200 but ≤400c/ml. Republic of Ireland ceased reporting in 2018; young people in Ireland are are excluded are excluded from date of last report to CHIPS.

Viral load 12 months1 after starting 1st and 2nd line cART for those switching2 to 2nd line (N=852 children switched to 2nd line after at least 12 months on 1st line3)

Number (%) undetectable 12 months after starting3....

1st line cART 2nd line cART

Year starting 2nd- line cART ≤50 or ≤lower assay limit4 ≤200 or ≤lower assay limit4 Total ≤50 or ≤lower assay limit5 ≤200 or ≤lower assay limit5 Total

2000-04 7 (9%) 11 (14%) 81 40 (53%) 48 (63%) 76 2005-09 65 (42%) 93 (60%) 154 94 (59%) 112 (70%) 160 2010-14 140 (61%) 172 (75%) 229 174 (74%) 197 (84%) 235 2015- 164 (76%) 191 (88%) 217 140 (81%) 155 (90%) 172 Total 376 (55%) 467 (69%) 681 448 (70%) 512 (80%) 643

Data on 547 children who are in active follow-up in paediatric care

Those who have died, lost to follow-up, left the UK or transferred to adult care are excluded.

16 (2%) Wales

Regional distribution of main follow-up clinic for 547 children in active follow-up in CHIPS

Scotland 27 (5%) Rest of England 279 (51%) London 222 (41%) Wales 15(3%) N Ireland 4(<1%)

Clinics in the Republic of Ireland last reported data to CHIPS in March 2018 at which time there were 47 children in paediatric care.

Demographics (N=547)

(Data provided by NSHPC)

• 311 (57%) are female
• 283 (52%) born UK/Ireland, 244 (45%) born abroad (not known for 25 children)
• Ethnicity:

Current age (on 31st March 2020):

• Diagnosis of maternal infection (N=501 with perinatal HIV):

White 33 (6%) Black 406 (74%) Mixed 67 (12%) Other 14 (3%) Not known 27 (5%) Known after delivery 379 (76%) Known before delivery 99 (20%) Not known 23 (5%) <10 years 66 (12%) 10 to <16 years 237 (43%) 16 to <18 years 132 (24%) 18+ years 112 (20%)

Age <10 years Age 10 to <16 years Age 16 to <18 years Age 18+ years

Regional distribution of main follow-up clinic by current age on 31st March 2020 (N=547)

50 100 150 200 250 300 London Rest of England Scotland Wales

• N. Ireland

Number of children

Year of last follow-up (N=525*)

7 4 49 465

100 200 300 400 500 Up to 2016 2017 2018 Since Jan 2019

Number of children

*There were 22 children registered in CHIPS by 31st March 2020 for whom a CHIPS form is yet to be returned

Clinical stage by age at last follow-up (N=525)

• No. of children

< 2 years 2-4 years 5-9 years 10-14 years ≥15 years Total (%) Stage N/A 5 (100%) 11 (79%) 37 (64%) 125 (62%) 148 (60%) 326 (62%) Stage B 0 (0%) 2 (14%) 13 (22%) 31 (15%) 47 (19%) 93 (18%) Stage C 0 (0%) 1 (7%) 8 (14%) 47 (23%) 50 (20%) 106 (20%) Total 5 (100%) 14 (100%) 58 (100%) 203 (100%) 245 (100%) 525 (100%) 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

% of children

• No. of children

< 2 years 2-4 years 5-9 years 10-14 years ≥15 years Total (%) Naive 0 (0%) 0 (0%) 0 (0%) 2 (1%) 4 (2%) 6 (1%) 2 classes 4 (80%) 6 (43%) 24 (43%) 64 (32%) 65 (27%) 163 (32%) 3 classes 1 (20%) 6 (43%) 19 (34%) 74 (37%) 86 (36%) 186 (36%) 4-5 classes 0 (0%) 2 (14%) 13 (23%) 61 (30%) 83 (35%) 159 (31%) Total 5 (100%) 14 (100%) 56 (100%) 201 (100%) 238 (100%) 514 (100%)

Number of ART drug classes ever exposed to

N=514 children with follow-up since January 2018

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

% of children

ART at last follow-up

501 children with follow-up since Jan 2018 were prescribed ART. 176 prescribed a PI-, 126 NNRTI-, 488 NRTI-, 234 INSTI- containing regimen, 1 child received drugs of other classes. 393 were prescribed fixed dose combinations. 143 119 200 18 4 3 5 3 2 2 2

100 200 300

PI+NRTI NNRTI+NRTI INSTI+NRTI INSTI+PI+NRTI INSTI+NNRTI+NRTI Other cART DTG+DRV/r DTG+DRV/c PI+NRTI* Other dual** DRV/r

Number of children

3+ drug cART regimens 2 drug regimens 1 drug regimen

*DRV/r + TDF, DRV/r + 3TC ** DTG+RPV, RAL+ATV/r

Most recent CD4 count (N=435)

Children ≥ 5 years old followed up since Jan 2018

• No. of children

0-200 201-350 351-500 501-1000 >1000 Total Naïve (0%) (0%) 2 (33%) 3 (50%) 1 (17%) 6 (100%) On initial cART 2 (2%) 3 (3%) 12 (10%) 64 (55%) 34 (29%) 116 (100%) On other ART 7 (2%) 18 (6%) 30 (10%) 183 (60%) 69 (22%) 307 (100%) Off ART (0%) (0%) 2 (33%) 3 (50%) 1 (17%) 6 (100%) 20 40 60 80 100 120 140 160 180 200

Number of children

Note: Row percentages now provided. Initial cART defined as first line therapy is 3 or more drugs across two classes (exclude unboosted PI) or 3NRTIs including ABC. Other ART includes those who have switched to a subsequent line defined as change in/addition of new drug class, change/addition of PI drug, addition of second NNRTI or switch to a 3NRTI including ABC regimen OR on a 3+ drug regimen which does not meet the definition of cART (unboosted PI or NRTI without ABC). .

• No. of children

≤50c/ml (or ≤lower assay limit**) ≤200c/ml (or ≤lower assay limit) ≤400c/ml (or ≤lower assay limit) >400c/ml Total Naïve 3 (50%) 3 (50%) 3 (50%) 3 (50%) 6 (100%) On initial cART 130 (90%) 136 (94%) 138 (95%) 7 (5%) 145 (100%) On other ART 293 (85%) 311 (90%) 321 (93%) 25 (7%) 346 (100%) Off ART 5 (71%) 5 (71%) 5 (71%) 2 (39%) 7 (100%)

Most recent viral load (N=504)

Children followed up since January 2018

50 100 150 200 250 300 350

Number of children

Note: Row percentages now provided. Initial cART defined as first line therapy is 3 or more drugs across two classes (exclude unboosted PI) or 3NRTIs including ABC. Other ART includes those who have switched to a subsequent line defined as change in/ addition of new drug class, change/addition of PI drug, addition of second NNRTI or switch to a 3NRTI including ABC regimen OR on a 3+ drug regimen which does not meet the definition of cART (unboosted PI or NRTI without ABC). **3/504 (1%) of undetectable results had a lower limit of detection >50 but ≤400c/ml and are included here.

Transfers to adult care

(N=1324)

• 695 (53%) female
• 504 (38%) born UK/Ireland, 805 (61%) born abroad (not known for 15 adolescents)
• 1179 (89%) perinatal HIV

Age at transfer* <16 years 97 (8%) 16-17 years 600 (46%) 18-19 years 515 (40%) 20+ years 80 (6%) Current age (on 31st March 2020)* 16-17 years 10 (1%) 18-19 years 111 (8%) 20-24 years 609 (47%) 25-29 years 409 (31%) 30+ years 169 (13%)

* Excludes 32 aged over 21 years, not been seen for >5 years and so presumed transferred but with no transfer date available ** Excludes 16 known to have died in adult care. Deaths in adult care are not routinely collected for all patients so this may be an underestimate

Treatment status at last visit in paediatric care prior to transfer to adult care

(N=1224*)

*Excluding 100 with no clinic visit reported to CHIPS in the 12 months prior to the transfer date. Republic of Ireland ceased reporting in 2018; young people in Ireland are excluded from that date onwards.

51% 67% 72% 88% 17% 6% 10% 12% 14% 11% 8% 2% 18% 17% 9% 3% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Before 2005 2005 to 2009 2010 to 2014 2015+ % prescribed ART at last visit in paediatric care

Treatment interruption ART naive Other ART cART

n=72 n=218 n=429 n=505

CD4 count at last visit in paediatric care prior to transfer to adult care

(N=1157*)

All patients eligible for inclusion regardless of treatment status and so caution needed when comparing across calendar years where the percentages

• n ART differ.

*Excluding 100 patients with no clinic visit reported to CHIPS in the 12 months prior to the transfer date and 67 with no CD4 count available. Republic of Ireland ceased reporting in 2018; young people in Ireland are excluded from that date onwards

22% 18% 11% 5% 30% 25% 16% 8% 22% 23% 22% 18% 25% 35% 51% 70% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Before 2005 2005 to 2009 2010 to 2014 2015+ Distribution of CD4 counts at last visit in paediatric care

>500 351-500 201-350 ≤200

n=67 n=215 n=414 n=461

Viral load at last visit in paediatric care prior to transfer to adult care

(N=1219*)

All patients eligible for inclusion regardless of treatment status and so caution needed when comparing across calendar years where the percentages

• n ART differ.

*Excluding 100 with no clinic visit reported to CHIPS in the 12 months prior to the transfer date and 5 with no viral load available. Republic of Ireland ceased reporting in 2018; young people in Ireland are excluded from that date onwards

30% 38% 58% 91% 1% 13% 7% 8% 4% 4% 2% 4% 28% 23% 17% 14% 37% 22% 16% 10% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Before 2005 2005 to 2009 2010 to 2014 2015+

Distribution of VLs at last visit in paediatric care

>10,000 401-10,000 201-400 51-200 ≤50

n=71 n=216 n=428 n=504

Outcome 1: Retention in care

Percentage of newly diagnosed children in 2017 and 2018 who had ≥2 CD4 and ≥2 VL measurements within 12 months of diagnosis

Notes: The y axis shows percentages, and the top of each bar shows the number of children

9 10 1 19 4 9 13

0% 20% 40% 60% 80% 100%

Percentage (%)

2017 (n=19) 2018 (n=15) v v

Republic of Ireland ceased reporting in 2018. As no follow-up data are available during 2018, and only partial data are available for 2017 the outcome measures are restricted to children in the United Kingdom.

Outcome 2: Retention on ART

Percentage of patients newly starting ART in (a) 2016 and (b) 2017 who were still on ART in 2017 and 2018, respectively

Notes: The y axis shows percentages, and the top of each bar shows the number of children

19 20 1 40 11 13 2 24

0% 20% 40% 60% 80% 100%

Percentage (%)

2017 (n=43) 2018 (n=25) v

Republic of Ireland ceased reporting in 2018. As no follow-up data are available during 2018, and only partial data are available for 2017 the outcome measures are restricted to children in the United Kingdom.

Outcome 3A: Immune status in children <5 yrs

Percentage of children aged <5 years with ≥1 CD4% measure ≥25% in 2017 and 2018, by ART status

The y axis shows percentages, and the top of each bar shows the number of children Denominator includes all children diagnosed >1 year before 2017/2018, irrespective of availability of CD4/ART data. Data for 2018 are provisional.

5 2 3 2 8 1 6 1 1 15 3 9 3

0% 20% 40% 60% 80% 100% On ART (n=14) Not on ART (n=3) On ART (n=10) Not on ART (n=0)

Percentage (%)

2018 2017 v

Republic of Ireland ceased reporting in 2018. As no follow-up data are available during 2018, and only partial data are available for 2017 the outcome measures are restricted to children in the United Kingdom.

Outcome 3B: Immune status in children ≥5 years

Percentage of children aged ≥5 years with ≥1 CD4 measure ≥350 cells/mm3 in 2017 and 2018, by ART status 231 22 232 15 218 22 221 15 35 2 36 2 484 46 489 32

0% 20% 40% 60% 80% 100% On ART (n=539) Not on ART (n=54) On ART (n=413) Not on ART (n=31)

Percentage (%)

The y axis shows percentages, and the top of each bar shows the number of children Denominator includes all children diagnosed >1 year before 2017/2018, irrespective of availability of CD4/ART data. Data for 2018 are provisional.

2018 2017 v

Republic of Ireland ceased reporting in 2018. As no follow-up data are available during 2018, and only partial data are available for 2017 the outcome measures are restricted to children in the United Kingdom. Note: This outcome has been updated since version 1.0 of these slides to exclude n=133 and n=178 children who were not in paediatric care for the whole of 2017 and 2018, respectively.

Outcome 4A: Virological response on ART

Percentage of children on ART with ≥2 VL measures <50c/ml and <400c/ml, in 2017 and 2018

The y axis shows percentages, and the top of each bar shows the number of children. Denominator includes all children on ART throughout 2017/2018 (including those with ART interruptions <30 days), including those with missing VL

• data. Data for 2018 are provisional.

Dotted bar: VL <400c/ml Plain bar: VL <50 c/ml

236 210 31 477 189 180 22 391 207 193 29 429 164 169 20 353

0% 20% 40% 60% 80% 100%

Percentage (%)

2017 (n=571) 2018 (n=436) v

Republic of Ireland ceased reporting in 2018. As no follow-up data are available during 2018, and only partial data are available for 2017 the outcome measures are restricted to children in the United Kingdom.

Outcome 4B: Virological response on ART, age≥13yrs

Percentage of adolscents aged ≥13 years on ART with ≥2 VL measures <50c/ml, and <400 c/ml, in 2017 and 2018

The y axis shows percentages, and the top of each bar shows the number of children. Denominator includes all children on ART throughout 2017/2018 (including those with ART interruptions <30 days), including those with missing VL

• data. Data for 2018 are provisional.

Dotted bar: VL <400c/ml Plain bar: VL <50 c/ml

132 107 21 260 101 99 15 215 113 95 19 227 86 89 13 188

0% 20% 40% 60% 80% 100%

Percentage (%)

2017 (n=324) 2017 (n=247) v

Republic of Ireland ceased reporting in 2018. As no follow-up data are available during 2018, and only partial data are available for 2017 the outcome measures are restricted to children in the United Kingdom.

Outcome 5: Description of deaths since 2017

• There have been no deaths reported in paediatric care since 2017

CHIPS+ recruitment

93 of 307 patients age ≥15 years by March 2020 and still in paediatric care have consented to CHIPS+

20 40 60 80 100 120 140 160 180

London Rest of England Scotland Wales

• N. Ireland

Number of patients aged >=15 years

40/120 (33%) 53/156 (34%)

Consented Not Consented CHIPS+ opened to recruitment at the first clinic on 24th January 2018. Recruitment is now open at 37 clinics in England and Scotland.

Involvement in PENTA trials

Some patients from CHIPS are currently involved in ODYSSEY and SMILE trials

Centres with patients in ODYSSEY / SMILE Birmingham – 3/1 GOSH – 1/0 King’s – 1/1 Evelina - 0/2 Leicester – 1/0 Leeds – 1/0 St Mary’s - 1/0 Bristol – 0/1

Enrolments to ODYSSEY began in Sept 2016 and recruitment is now closed in the UK as the overall target

• f at least 700 participants weighing ≥14kg has been reached.

The SMILE trial reached it’s enrolment target in August 2019 and is now closed for recruitment. All SMILE participants will remain in follow-up until the end of trial, which is planned for Autumn 2020.

Recent publications/presentations:

• Bollen P et al. Simplified dolutegravir dosing for HIV-infected children weighing ≥20kg; multicentre

pharmacokinetic and safety substudies within the ODYSSEY randomised trial. Lancet HIV (accepted)

• Lanyon C et al. “Because we all have to grow up;” Supporting adolescents in Uganda to develop core

competencies to transition towards managing their HIV more independently. JIAS (accepted)

• Waalewijn H et al. Adequate dolutegravir exposure dosed BID with rifampicin in children 6 to < 18 years. 27th

Conference on Retroviruses and Opportunistic Infections (CROI), 2020: Boston, MA.

• Conway et al. Youth Trial Board - Nothing about us without us. 3rd International Workshop on HIV and

Adolescence, 2019: Nairobi, Kenya.

• Waalewijn H et al. Pharmacokinetics of dolutegravir 5mg dispersible tablets in children weighing 6 to <20kg

dosed using WHO weight bands. 10th IAS Conference on HIV Science, 2019. Mexico City, Mexico.

• Turner B et al. Analysing small groups within clinical trials, while borrowing information from larger groups. 40th

Annual Conference of the International Society for Clinical Biostatics 2019: Leuven, Belgium.

• Bollen P et al. Adult dolutegravir 50mg film-coated tablets in children living with HIV weighing 20 to <25kg.

Conference of Retroviruses and Opportunistic Infections (CROI) 2019: Seattle, WA.

Recent CHIPS-related publications

(based either wholly or partly on CHIPS data)

• Judd, A. Melvin, D. Foster, C. Le Prevost, M. Factors associated with non-adherence to antiretroviral therapy among

young people living with perinatally acquired HIV in England. Journal of the Association of Nurses in AIDS Care. (In press).

• Chappell E, Lyall H, Riordan A, Thorne C, Foster C, Butler K, et al. The cascade of care for children and adolescents

with HIV in the UK and Ireland, 2010 to 2016. Journal of the International AIDS Society 2019; 22(9):e25379

• Copelyn, J., Thompson, L.C., Le Prevost, M. et al. Self-harm in young people with perinatal HIV and HIV negative young

people in England: cross sectional analysis. BMC Public Health 19, 1165, 2019.

• Sturgeon, K. Castro, H. Le Prevost, M. et al. Experiences of transition to adult care and readiness to self-manage care in

young people with perinatal HIV in England. HIV Nursing 20(1), 2020. (In press).

• The European Pregnancy and Paediatric HIV Cohort Collaboration (EPPICC) and Early-treated Perinatally HIV-infected

Individuals: Improving Children’s Actual Life with Novel Immunotherapeutic Strategies (EPIICAL) study groups. Predictors of faster virological suppression in early treated infants with perinatal HIV from Europe and Thailand. AIDS. 2019 Feb 7. DOI: 10.1097/QAD.0000000000002172.

• Collaborative Initiative for Paediatric HIV Education and Research (CIPHER) Global Cohort Collaboration. Incidence of

switching to second-line antiretroviral therapy and associated factors in children with HIV: an international cohort

• collaboration. Lancet HIV. 2019 Feb;6(2):e105-e115. DOI: 10.1016/S2352-3018(18)30319-9.
• Please see www.chipscohort.co.uk for a complete list.

Recent CHIPS-related presentations

(based either wholly or partly on CHIPS data)

• Jackson C, Bamford A, Crichton S, et al on behalf of EPPICC. Long-term non-progression in children with perinatally

acquired HIV. Conference on Retroviruses and Opportunistic Infections (CROI) 2020, Boston, USA (poster)

• Crichton S, Collins I J, Turkova A, et al on behalf of EPPICC. Abacavir dosing, effectiveness, and safety in young infants

living with HIV in Europe. Conference on Retroviruses and Opportunistic Infections (CROI) I 2020, Boston, USA (poster)

• Crichton S, Jesson J, Aké-Assi M-K, et al on behalf of CIPHER. Global variations in pubertal growth in adolescents living

with perinatal HIV. Conference on Retroviruses and Opportunistic Infections (CROI) 2020, Boston, USA (poster)

• Collins I J, Crichton S, Turkova A, et al on behalf of CHIPS. Children and adolescents in the UK/ Ireland CHIPS cohort
• n integrase inhibitors: safety and effectiveness.11th International Workshop on HIV Pediatrics, Mexico City, July 2019

(poster)

• Chappell E, Chiappini E, Galli L,et al on behalf of EPPICC. Malignancies in children with HIV in Eastern and Western

Europe and Thailand. 11th International Workshop on HIV Pediatrics, Mexico City, July 2019 (oral)

• Crichton S, Collins I J, Turkova A, et al on behalf of CHIPS. Virological suppression/rebound and ART discontinuation in

children and adolescents switching to dolutegravir while virally suppressed in the UK/Ireland: a propensity score analysis. 11th International Workshop on HIV Pediatrics, Mexico City, July 2019 (oral)

• Crichton S, Collins I J, Bamford A, et al on behalf of CHIPS. Abacavir use in young infants in the UK and Ireland CHIPS
• cohort. 11th International Workshop on HIV Pediatrics, Mexico City, July 2019 (poster)
• Jesson J, Crichton S, Malateste K, et al on behalf of CIPHER. Growth and immunodeficiency of ART-treated adolescents

living with perinatally acquired HIV. 11th International Workshop on HIV Pediatrics, Mexico City, July 2019 (oral)

• Please see www.chipscohort.co.uk for a complete list.

Recent NSHPC publications/presentations

Publications

• Rasi V, Cortina-Borja M, Peters H, et al. Surveillance of congenital anomalies following exposure to Raltegravir or

Elvitegravir during pregnancy in the UK and Ireland, 2008-2018. JAIDS. 2019 March; 80(3):264-268. doi: 10.1097/QAI.0000000000001924.

• Peters H, Thorne C, Tookey PA, et al. National audit of perinatal HIV infections in the UK, 2006-2013: what lessons can

be learnt? HIV Medicine. 2018 April; 19(4): 280-289. DOI:10.1111/hiv.12577

• Favarato G, Townsend C, Bailey H, et al. Protease inhibitors and preterm delivery: another piece in the puzzle. AIDS.

2018 Jan; 32(2):243-252. doi: 10.1097/QAD.0000000000001694 Presentations

• Yan H, Peters H, Thorne C. A retrospective case note review of the neonatal deaths of infants born to women living with

HIV in the UK and Ireland 1998-2017 Public Health Science Conference London 2019 . (Poster)

• Francis K, Thorne C, Sconza R, Horn A, Peters H. Supported breastfeeding among women with diagnosed HIV in the

UK- the current picture. 11th International Workshop on HIV Pediatrics, Mexico City, July 2019 (Poster)

• Francis K, Peters H, Horn A, et al. BHIVA guidelines and breastfeeding in the UK: the current picture. 25th Annual

Conference of the British HIV Association (BHIVA), 2-5 April 2019, Bournemouth, UK. (Oral)

• Peters H, Francis K, Sconza R, et al. Successes and emerging challenges in prevention of vertical HIV transmission in

the UK and Ireland. 13th Annual Conference of the Children’s HIV Association (CHIVA), 15 March 2019, London, UK. (Oral); HIV Drug Therapy, 28-31 October 2018, Glasgow, UK. (Oral and Poster)

Acknowledgements

We thank the families and staff at hospitals which participate in CHIPS. CHIPS is funded by the NHS (London Specialised Commissioning Group), and has received additional support from PENTA Foundation, Bristol-Myers Squibb, Boehringer Ingelheim, GlaxoSmithKline, Janssen, Roche, Abbott, and Gilead.

For further information on CHIPS, please visit: www.chipscohort.ac.uk