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 of children with HIV in the UK and Ireland. • The collaboration is between – 37 clinics 1 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 1400 1324 1200 Number of children 1000 800 547 600 400 200 124 125 47 43 0 Still in Exited Left country Lost to Transferred Died** CHIPS CHIPS follow-up to adult follow-up (RoI only)* care *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*) Age at Up to 2014 2015 2016 2017 2018+ Total presentation 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%) * 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 of UK/Irish cohort of patients with HIV acquired in childhood, 1996-2019 Age group Median age Year No <1 year 1-4 years 5-9 years 10-14 years 15-19 years 20+ years (IQR) 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%) 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 of UK/Irish cohort of patients with HIV acquired in childhood, 1996-2019 <1 year 1-4 years 5-9 years 10-14 years 15-19 years 20+ years 100% 80% 60% 40% 20% 0% 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 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.

Age of UK/Irish cohort of patients with HIV acquired in childhood & in paediatric follow-up, 1996-2019 Age group Median age Year No <1 year 1-4 years 5-9 years 10-14 years 15-19 years 20+ years (IQR) 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%) 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 <1 year 1-4 years 5-9 years 10-14 years 15-19 years 20+ years 100% 80% 60% 40% 20% 0% 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 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 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 100% 100 90% 90 Admission rate (per 100 person-years) Percentage of children in follow-up 80% 80 admitted at least once each year 70% 70 60% 60 50% 50 40% 40 30% 30 20% 20 10% 10 0% 0 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 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 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.