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Survival, hospitalisation and surgery in children born with Pierre Robin sequence: a European population-based cohort study
,
Ester Garne,
Alessio Coi,
Joachim Tan,
Maria Loane,
Elisa Ballardini,
Clara Cavero-Carbonell,
Hermien EK de Walle,
Miriam Gatt,
Mika Gissler,
Sue Jordan ,
Kari Klungsøyr,
Natalie Lelong,
Stine Kjaer Urhoj ,
Diana G Wellesley,
Joan K Morris
Archives of Disease in Childhood, Pages: archdischild - 2022
Swansea University Author:
Sue Jordan
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© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/ This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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DOI (Published version): 10.1136/archdischild-2022-324716
Abstract
Objective To evaluate survival, hospitalisations and surgical procedures for children born with Pierre Robin sequence (PRS) across Europe.Design Multicentre population-based cohort study.Setting Data on 463 live births with PRS from a population of 4 984 793 from 12 EUROCAT congenital anomaly regist...
| Published in: | Archives of Disease in Childhood |
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| ISSN: | 0003-9888 1468-2044 |
| Published: |
BMJ
2023
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| Online Access: |
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| URI: | https://cronfa.swan.ac.uk/Record/cronfa63449 |
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| Abstract: |
Objective To evaluate survival, hospitalisations and surgical procedures for children born with Pierre Robin sequence (PRS) across Europe.Design Multicentre population-based cohort study.Setting Data on 463 live births with PRS from a population of 4 984 793 from 12 EUROCAT congenital anomaly registries.Methods Data on children with PRS born 1995–2014 were linked electronically to data on mortality, hospitalisations and surgical procedures up to 10 years of age. Each registry applied a common data model to standardise the linked data and ran common syntax scripts to produce aggregate tables. Results from each registry were pooled using random-effect meta-analyses.Main outcome measures Probability of survival, proportion of children hospitalised and undergoing surgery, and median length of hospital stay.Results The majority of deaths occurred in the first year of life with a survival rate of 96.0% (95% CI 93.5% to 98.5%); 95.1% (95% CI 92.7% to 97.7%) survived to age 10. In the first year of life, 99.2% (95% CI 95.0% to 99.9%) of children were hospitalised with a median stay of 21.4 days (95% CI 15.6 to 27.2), and 67.6% (95% CI 46.6% to 81.8%) underwent surgery. In the first 5 years of life, 99.2% of children underwent a median of two surgical procedures. Between ages 5 and 9, 58.3% (95% CI 44.7% to 69.7%) were hospitalised with a median annual stay of 0.3 days.Conclusions Children with PRS had high mortality and morbidity with long hospital stays in the first year of life, and almost all had surgery before 5 years of age. Survival improved after infancy with fewer hospitalisations after age 5. This study provides reliable estimates of the survival and morbidity of children with PRS for families and healthcare providers. |
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| College: |
Faculty of Medicine, Health and Life Sciences |
| Funders: |
This project received funding from the European Union’s Horizon 2020 Research and Innovation programme (under grant agreement number 733001, January 2017–December 2021; https://ec.europa.eu/programmes/horizon2020/en). |
| Start Page: |
archdischild |
| End Page: |
2022 |