Table 1.
Respondent characteristics
| Surveys | Children and Young People (CYP) | Parents |
|---|---|---|
| Completed by, n | 25 | 69 |
| Participant age, years, median (range) | 22 (12-32) | 38 (23-60) |
| Child’s age, years, median (range) | 8.5 (0-20) | |
| Gender | (of parents child) | |
|
Female Male Missing |
23 (92.0%) 2 (8.0%) 0 (0.0%) |
31 (44.9%) 36 (52.2%) 2 (2.9%) |
| Relationship to CYP | ||
|
Mother Father Foster Carer Adoptive Parent Grandparent Missing |
60 (87.0%) 3 (4.3%) 1 (1.4%) 1 (1.4%) 1 (1.4%) 3 (4.3%) |
|
| Respondents by nation, n (%) | ||
|
United Kingdom Ireland Missing |
25 (100.0%) 0 (0.0%) 0 (0.0%) |
63 (91.3%) 4 (5.8%) 2 (2.9%) |
| Cause of Hydrocephalus, n (%) | ||
|
Infection (e.g. meningitis, encephalitis) Aqueductal stenosis Arachnoid cyst Chiari malformation Head injury Intraventricular haemorrhage associated with premature birth Other Haemorrhage (e.g. subarachnoid, cerebellar) Dandy walker malformation Unsure/Unknown Other Missing |
2 (8.0%) 3 (12.0%) 0 (0.0%) 2 (8.0%) 1 (4.0%) 3 (12.0%) 3 (12.0%) 1 (4.0%) 5 (20.0%) 4 (16.0%) 1 (4.0%) |
4 (5.8%) 6 (8.7%) 4 (5.8%) 8 (11.6%) 1 (1.4%) 12 (17.4%) (2, 2.9%) 0 (0.0%) 7 (10.1%) 23 (33.3%) 2 (2.9%) |
| Had a permanent shunt, n (%) | (parents child) | |
|
Yes No Unsure Missing |
21 (84.0%) 3 (12.0%) 1 (4.0%) 0 (0.0%) |
61 (88.4%) 5 (7.2%) 1 (1.4%) 2 (2.9%) |
| Has a permanent shunt now, n (%) | (parents child) | |
|
Yes Missing |
19 (76.0%) 6 (24.0%) |
57 (82.6%) 12 (14.5%) |
| Most recent shunt operation, n (%) | ||
|
2000 2003 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020 Missing |
1 (4.0%) 0 (0.0%) 1 (4.0%) 3 (12.0%) 1 (4.0%) 1 (4.0%) 1 (4.0%) 1 (4.0%) 0 (0.0%) 2 (8.0%) 0 (0.0%) 2 (8.0%) 0 (0.0%) 1 (4.0%) 0 (0.0%) 2 (8.0%) 2 (8.0%) 2 (8.0%) 5 (20.0%) |
0 (0.0%) 1 (1.4%) 0 (0.0%) 1 (1.4%) 1 (1.4%) 1 (1.4%) 2 (2.9%) 3 (4.3%) 1 (1.4%) 2 (2.9%) 1 (1.4%) 1 (1.4%) 2 (2.9%) 7 (10.1%) 6 (8.7%) 9 (13.0%) 13 (18.8%) 8 (11.6%) 10 (14.5%) |
| Had other hydrocephalus related operations or procedures, n (%) | (parents child) | |
|
Yes No Unsure Missing |
16 (64.0%) 8 (32.0%) 1 (4.0%) 0 (0.0%) |
37 (53.6%) 30 (43.5%) 0 (0.0%) 2 (2.9%) |