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Table 1 Paediatric deaths from complex chronic conditions in Portugal (1987–2011) – demographics, cause and place of death

From: Trends in cause and place of death for children in Portugal (a European country with no Paediatric palliative care) during 1987–2011: a population-based study

Variable Category All CCCs CCC categories
Cancer Neuromuscular Cardiovascular Respiratory Renal Gastrointestinal Haem. & Immun. Metabolic Other
N(%) 10,571(100) 2811(26.6) 2128(20.1) 2600(24.6) 419(4.0) 195(1.8) 242(2.3) 181(1.7) 284(2.7) 1711(16.2)
Gender Male 5814(55.0) 1558(55.4) 1153(54.2) 1433(55.1) 249(59.4) 128(65.6) 137(56.6) 111(61.3) 147(51.8) 898(52.5)
Female 4756(45.0) 1253(44.6) 975(45.8) 1167(44.9) 170(40.6) 67(34.4) 105(43.4) 70(38.7) 137(48.2) 812(47.5)
Nationality Portuguese 7078(67.0) 2111(75.1) 1475(69.3) 1761(67.7) 286(68.3) 97(49.7) 178(73.6) 139(76.8) 199(70.1) 832(48.6)
Other 2102(19.9) 697(24.8) 414(19.5) 492(18.9) 94(22.4) 15(7.7) 26(10.7) 42(23.2) 85(29.9) 237(13.9)
Missing 1391(13.2) 3(0.1) 239(11.2) 347(13.3) 39(9.3) 83(42.6) 38(15.7) 0(0.0) 0(0.0) 642(37.5)
Age of death Median, years
(IQR)
0.94
(0.04–8.94)
9.86
(5.16–14.73)
2.00
(0.14–10.89)
0.18
(0.02–0.96)
0.12
(0.00–0.64)
0.00
(0.00–0.21)
0.22
(0.03–1.20)
2.17
(0.65–10.77)
1.78
(0.25–7.94)
0.01
(0.00–0.25)
0–27 days 3055(28.9) 20(0.7) 449(21.1) 1005(38.7) 193(46.1) 135(69.2) 88(36.4) 0(0.0) 38(13.4) 1127(65.9)
28–364 days 2289(21.7) 111(3.9) 457(21.5) 961(37.0) 138(32.9) 22(11.3) 87(36.0) 67(37.0) 91(32.0) 355(20.7)
1–5 years 1855(17.5) 708(25.2) 405(19.0) 413(15.9) 30(7.2) 17(8.7) 38(15.7) 49(27.1) 71(25.0) 124(7.2)
6–10 years 1259(11.9) 733(26.1) 290(13.6) 102(3.9) 18(4.3) 3(1.5) 13(5.4) 21(11.6) 34(12.0) 45(2.6)
11–14 years 1046(9.9) 586(20.8) 280(13.2) 64(2.5) 21(5.0) 11(5.6) 9(3.7) 13(7.2) 30(10.6) 32(1.9)
15–17 years 1067(10.1) 653(23.2) 247(11.6) 55(2.1) 19(4.5) 7(3.6) 7(2.9) 31(17.1) 20(7.0) 28(1.6)
<1 year 5344(50.6) 131(4.7) 906(42.6) 1966(75.6) 331(79.0) 157(80.5) 175(72.3) 67(37.0) 129(45.4) 1482(86.6)
≥1 year 5227(49.4) 2680(95.3) 1222(57.4) 634(24.4) 88(21.0) 38(19.5) 67(27.7) 114(63.0) 155(54.6) 229(13.4)
Place of death Home 2052(19.4) 794(28.2) 623(29.3) 333(12.8) 21(5.0) 24(12.3) 23(9.5) 21(11.6) 55(19.4) 158(9.2)
Hospital 8383(79.3) 1997(71.0) 1452(68.2) 2230(85.8) 397(94.7) 171(87.7) 218(90.1) 159(87.8) 226(79.6) 1533(89.6)
Other 136(1.3) 20(0.7) 53(2.5) 37(1.4) 1(0.2) 0(0.0) 1(0.4) 1(0.6) 3(1.1) 20(1.2)
  1. Haem. & Immun Haematology and Immunodeficiency, IQR interquartile range, Other other congenital and genetic conditions. Except for “N” and “Median age of death”, values in parenthesis refer to percentages within categories in each column. Percentages may not add up to 100 due to rounding. The high percentages of missing data for nationality in children dying from renal and other congenital / genetic causes are probably due to death occurring soon after birth, before civil registration. Gender information was missing only for one child (a neonate with other congenital / genetic condition), and there were no missing data for age and place of death