Allin, Benjamin Saul Raywood;
Opondo, Charles;
Bradnock, Timothy John;
Kenny, Simon Edward;
Kurinczuk, Jennifer J;
Walker, Gregor M;
Knight, Marian;
(2021)
Outcomes at five to eight years of age for children with Hirschsprung’s disease.
Archives of Disease in Childhood
, 106
(5)
pp. 484-490.
10.1136/archdischild-2020-320310.
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Abstract
Objective: This study describes core outcomes of Hirschsprung’s disease (HD) in a UK-wide cohort of primary school-aged children. // Design: A prospective cohort study conducted from 1 October 2010 to 30 September 2012. Outcomes data were collected from parents and clinicians when children were 5–8 years of age, and combined with data collected at birth, and 28 days and 1 year post diagnosis. // Setting: All 28 UK and Irish paediatric surgical centres. // Participants: Children with histologically proven HD diagnosed at <6 months of age. // Main outcome measures: NETS1HD core outcomes. // Results: Data were returned for 239 (78%) of 305 children. Twelve children (5%) died prior to 5 years of age. Of the 227 surviving children, 30 (13%) had a stoma and 21 (9%) were incontinent of urine. Of the 197 children without a stoma, 155 (79%) maintained bowel movements without enemas/washouts, while 124 (63%) reported faecal incontinence. Of the 214 surviving children who had undergone a pull-through operation, 95 (44%) underwent ≥1 unplanned reoperation. 89 unplanned reoperations (27%) were major/complex. Of the 83 children with returned PedsQL scores, 37 (49%) had quality of life scores, and 31 (42%) had psychological well-being scores, that were ≥1 SD lower than the reference population mean for children without HD. // Conclusion: This study gives a realistic picture of population outcomes of HD in primary school-aged children in the UK/Ireland. The high rates of faecal incontinence, unplanned procedures and low quality of life scores are sobering. Ensuring clinicians address the bladder, bowel and psychological problems experienced by children should be a priority.
| Type: | Article |
|---|---|
| Title: | Outcomes at five to eight years of age for children with Hirschsprung’s disease |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1136/archdischild-2020-320310 |
| Publisher version: | https://doi.org/10.1136/archdischild-2020-320310 |
| Language: | English |
| Additional information: | This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/. |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Developmental Biology and Cancer Dept |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10214308 |
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