Skip to main content
Top
Published in: Pediatric Surgery International 5/2016

01-05-2016 | Original Article

Self-assessed physical health among children with congenital diaphragmatic hernia

Authors: Elin Öst, Maria Öjmyr Joelsson, Carmen Mesas Burgos, Björn Frenckner

Published in: Pediatric Surgery International | Issue 5/2016

Login to get access

Abstract

Purpose

The aim of this long-term follow-up study was to investigate the current self assessed physical health in a CDH birth cohort at a single center.

Methods

Between 1990 and 2009, 195 children born with CDH were treated at Astrid Lindgren Children’s Hospital. The primary survival rate was 85 %, and in 2010, 78 % were still alive. Data from medical records were supplemented by a questionnaire consisting of questions about perceived physical function. Patients were divided into groups according to time for intubation and need for extracorporeal membrane oxygenation.

Results

Children born with CDH reported themselves to be having greater problems with asthma, developmental delay, seizure disorder, poor vision, and scoliosis in comparison with normal Swedish children. They also described a sense of having less strength and becoming breathless more often than healthy friends. Symptoms of gastroesophageal reflux and abdominal pain were also reported.

Conclusions

The majority of the children perceived their physical health as being overall good, but there was an increase of reported symptoms correlating with the severity of the malformation.
Appendix
Available only for authorised users
Literature
1.
go back to reference Skari H, Bjornland K, Frenckner B, Friberg LG, Heikkinen M, Hurme T, Loe B, Mollerlokken G, Nielsen OH, Qvist N, Rintala R, Sandgren K, Serlo W, Wagner K, Wester T, Emblem R (2004) Congenital diaphragmatic hernia: a survey of practice in Scandinavia. Pediatr Surg Int 20(5):309–313. doi:10.1007/s00383-004-1186-7 CrossRefPubMed Skari H, Bjornland K, Frenckner B, Friberg LG, Heikkinen M, Hurme T, Loe B, Mollerlokken G, Nielsen OH, Qvist N, Rintala R, Sandgren K, Serlo W, Wagner K, Wester T, Emblem R (2004) Congenital diaphragmatic hernia: a survey of practice in Scandinavia. Pediatr Surg Int 20(5):309–313. doi:10.​1007/​s00383-004-1186-7 CrossRefPubMed
2.
go back to reference Burgos CM, Ost E, Wannberg M, Frenckner B (2012) High survival rate among newborns with congenital diaphragmatic hernia. 20-year follow up of patients treated in Stockholm. Lakartidningen 109(6):287–291PubMed Burgos CM, Ost E, Wannberg M, Frenckner B (2012) High survival rate among newborns with congenital diaphragmatic hernia. 20-year follow up of patients treated in Stockholm. Lakartidningen 109(6):287–291PubMed
3.
go back to reference Frenckner B, Ehren H, Granholm T, Linden V, Palmer K (1997) Improved results in patients who have congenital diaphragmatic hernia using preoperative stabilization, extracorporeal membrane oxygenation, and delayed surgery. J Pediatr Surg 32(8):1185–1189CrossRefPubMed Frenckner B, Ehren H, Granholm T, Linden V, Palmer K (1997) Improved results in patients who have congenital diaphragmatic hernia using preoperative stabilization, extracorporeal membrane oxygenation, and delayed surgery. J Pediatr Surg 32(8):1185–1189CrossRefPubMed
6.
go back to reference van den Hout L, Schaible T, Cohen-Overbeek TE, Hop W, Siemer J, van de Ven K, Wessel L, Tibboel D, Reiss I (2011) Actual outcome in infants with congenital diaphragmatic hernia: the role of a standardized postnatal treatment protocol. Fetal Diagn Ther 29(1):55–63. doi:10.1159/000322694 CrossRefPubMed van den Hout L, Schaible T, Cohen-Overbeek TE, Hop W, Siemer J, van de Ven K, Wessel L, Tibboel D, Reiss I (2011) Actual outcome in infants with congenital diaphragmatic hernia: the role of a standardized postnatal treatment protocol. Fetal Diagn Ther 29(1):55–63. doi:10.​1159/​000322694 CrossRefPubMed
7.
go back to reference Danzer E, Gerdes M, Bernbaum J, D’Agostino J, Bebbington MW, Siegle J, Hoffman C, Rintoul NE, Flake AW, Adzick NS, Hedrick HL (2010) Neurodevelopmental outcome of infants with congenital diaphragmatic hernia prospectively enrolled in an interdisciplinary follow-up program. J Pediatr Surg 45(9):1759–1766. doi:10.1016/j.jpedsurg.2010.03.011 CrossRefPubMed Danzer E, Gerdes M, Bernbaum J, D’Agostino J, Bebbington MW, Siegle J, Hoffman C, Rintoul NE, Flake AW, Adzick NS, Hedrick HL (2010) Neurodevelopmental outcome of infants with congenital diaphragmatic hernia prospectively enrolled in an interdisciplinary follow-up program. J Pediatr Surg 45(9):1759–1766. doi:10.​1016/​j.​jpedsurg.​2010.​03.​011 CrossRefPubMed
9.
go back to reference Valfre L, Braguglia A, Conforti A, Morini F, Trucchi A, Iacobelli BD, Nahom A, Chukhlantseva N, Dotta A, Corchia C, Bagolan P (2011) Long term follow-up in high-risk congenital diaphragmatic hernia survivors: patching the diaphragm affects the outcome. J Pediatr Surg 46(1):52–56. doi:10.1016/j.jpedsurg.2010.09.061 CrossRefPubMed Valfre L, Braguglia A, Conforti A, Morini F, Trucchi A, Iacobelli BD, Nahom A, Chukhlantseva N, Dotta A, Corchia C, Bagolan P (2011) Long term follow-up in high-risk congenital diaphragmatic hernia survivors: patching the diaphragm affects the outcome. J Pediatr Surg 46(1):52–56. doi:10.​1016/​j.​jpedsurg.​2010.​09.​061 CrossRefPubMed
10.
go back to reference Lally KP, Lally PA, Van Meurs KP, Bohn DJ, Davis CF, Rodgers B, Bhatia J, Dudell G (2006) Treatment evolution in high-risk congenital diaphragmatic hernia: ten years’ experience with diaphragmatic agenesis. Ann Surg 244(4):505–513. doi:10.1097/01.sla.0000239027.61651.fa PubMed Lally KP, Lally PA, Van Meurs KP, Bohn DJ, Davis CF, Rodgers B, Bhatia J, Dudell G (2006) Treatment evolution in high-risk congenital diaphragmatic hernia: ten years’ experience with diaphragmatic agenesis. Ann Surg 244(4):505–513. doi:10.​1097/​01.​sla.​0000239027.​61651.​fa PubMed
11.
go back to reference Davis PJ, Firmin RK, Manktelow B, Goldman AP, Davis CF, Smith JH, Cassidy JV, Shekerdemian LS (2004) Long-term outcome following extracorporeal membrane oxygenation for congenital diaphragmatic hernia: the UK experience. J Pediatr 144(3):309–315. doi:10.1016/j.jpeds.2003.11.031 CrossRefPubMed Davis PJ, Firmin RK, Manktelow B, Goldman AP, Davis CF, Smith JH, Cassidy JV, Shekerdemian LS (2004) Long-term outcome following extracorporeal membrane oxygenation for congenital diaphragmatic hernia: the UK experience. J Pediatr 144(3):309–315. doi:10.​1016/​j.​jpeds.​2003.​11.​031 CrossRefPubMed
12.
go back to reference van den Hout L, Reiss I, Felix JF, Hop WC, Lally PA, Lally KP, Tibboel D (2010) Risk factors for chronic lung disease and mortality in newborns with congenital diaphragmatic hernia. Neonatology 98(4):370–380. doi:10.1159/000316974 CrossRefPubMed van den Hout L, Reiss I, Felix JF, Hop WC, Lally PA, Lally KP, Tibboel D (2010) Risk factors for chronic lung disease and mortality in newborns with congenital diaphragmatic hernia. Neonatology 98(4):370–380. doi:10.​1159/​000316974 CrossRefPubMed
13.
go back to reference Reiss I, Schaible T, van den Hout L, Capolupo I, Allegaert K, van Heijst A, Gorett Silva M, Greenough A, Tibboel D (2010) Standardized postnatal management of infants with congenital diaphragmatic hernia in Europe: the CDH EURO Consortium consensus. Neonatology 98(4):354–364. doi:10.1159/000320622 CrossRefPubMed Reiss I, Schaible T, van den Hout L, Capolupo I, Allegaert K, van Heijst A, Gorett Silva M, Greenough A, Tibboel D (2010) Standardized postnatal management of infants with congenital diaphragmatic hernia in Europe: the CDH EURO Consortium consensus. Neonatology 98(4):354–364. doi:10.​1159/​000320622 CrossRefPubMed
15.
go back to reference Jancelewicz T, Vu LT, Keller RL, Bratton B, Lee H, Farmer D, Harrison M, Miniati D, Mackenzie T, Hirose S, Nobuhara K (2010) Long-term surgical outcomes in congenital diaphragmatic hernia: observations from a single institution. J Pediatr Surg 45(1):155–160. doi:10.1016/j.jpedsurg.2009.10.028 (discussion 160) CrossRefPubMed Jancelewicz T, Vu LT, Keller RL, Bratton B, Lee H, Farmer D, Harrison M, Miniati D, Mackenzie T, Hirose S, Nobuhara K (2010) Long-term surgical outcomes in congenital diaphragmatic hernia: observations from a single institution. J Pediatr Surg 45(1):155–160. doi:10.​1016/​j.​jpedsurg.​2009.​10.​028 (discussion 160) CrossRefPubMed
16.
go back to reference Peetsold MG, Heij HA, Kneepkens CM, Nagelkerke AF, Huisman J, Gemke RJ (2009) The long-term follow-up of patients with a congenital diaphragmatic hernia: a broad spectrum of morbidity. Pediatr Surg Int 25(1):1–17. doi:10.1007/s00383-008-2257-y CrossRefPubMed Peetsold MG, Heij HA, Kneepkens CM, Nagelkerke AF, Huisman J, Gemke RJ (2009) The long-term follow-up of patients with a congenital diaphragmatic hernia: a broad spectrum of morbidity. Pediatr Surg Int 25(1):1–17. doi:10.​1007/​s00383-008-2257-y CrossRefPubMed
20.
go back to reference ECMO extracorporeal cardiopulomnary support in critical care (2012) 4th edn. Extracorporeal Life Support Organization, USA ECMO extracorporeal cardiopulomnary support in critical care (2012) 4th edn. Extracorporeal Life Support Organization, USA
21.
go back to reference Wikland KA, Luo ZC, Niklasson A, Karlberg J (2002) Swedish population-based longitudinal reference values from birth to 18 years of age for height, weight and head circumference. Acta Paediatrica (Oslo, Norway: 1992) 91(7):739–754CrossRef Wikland KA, Luo ZC, Niklasson A, Karlberg J (2002) Swedish population-based longitudinal reference values from birth to 18 years of age for height, weight and head circumference. Acta Paediatrica (Oslo, Norway: 1992) 91(7):739–754CrossRef
23.
go back to reference Huber M, Knottnerus JA, Green L, van der Horst H, Jadad AR, Kromhout D, Leonard B, Lorig K, Loureiro MI, van der Meer JW, Schnabel P, Smith R, van Weel C, Smid H (2011) How should we define health? BMJ Clin Res Ed 343:d4163. doi:10.1136/bmj.d4163 CrossRef Huber M, Knottnerus JA, Green L, van der Horst H, Jadad AR, Kromhout D, Leonard B, Lorig K, Loureiro MI, van der Meer JW, Schnabel P, Smith R, van Weel C, Smid H (2011) How should we define health? BMJ Clin Res Ed 343:d4163. doi:10.​1136/​bmj.​d4163 CrossRef
25.
go back to reference Dawson J, Doll H, Fitzpatrick R, Jenkinson C, Carr AJ (2010) The routine use of patient reported outcome measures in healthcare settings. BMJ Clin Res Ed 340:c186. doi:10.1136/bmj.c186 CrossRef Dawson J, Doll H, Fitzpatrick R, Jenkinson C, Carr AJ (2010) The routine use of patient reported outcome measures in healthcare settings. BMJ Clin Res Ed 340:c186. doi:10.​1136/​bmj.​c186 CrossRef
27.
go back to reference Freyschuss U, Lannergren K, Frenckner B (1984) Lung function after repair of congenital diaphragmatic hernia. Acta paediatrica Scandinavica 73(5):589–593CrossRefPubMed Freyschuss U, Lannergren K, Frenckner B (1984) Lung function after repair of congenital diaphragmatic hernia. Acta paediatrica Scandinavica 73(5):589–593CrossRefPubMed
28.
go back to reference Wohl ME, Griscom NT, Strieder DJ, Schuster SR, Treves S, Zwerdling RG (1977) The lung following repair of congenital diaphragmatic hernia. J Pediatr 90(3):405–414CrossRefPubMed Wohl ME, Griscom NT, Strieder DJ, Schuster SR, Treves S, Zwerdling RG (1977) The lung following repair of congenital diaphragmatic hernia. J Pediatr 90(3):405–414CrossRefPubMed
29.
go back to reference Antonios Georgelis A-SM, Niklas Andersson, Tom Bellander (2013) Miljöhälsorapport Stockholms län 2013-barn och ungdomar [Environmental health report 2013, Stockholm County], M.e. Centrum för arbets och miljömedicin, Editor 2013. Stockholm Antonios Georgelis A-SM, Niklas Andersson, Tom Bellander (2013) Miljöhälsorapport Stockholms län 2013-barn och ungdomar [Environmental health report 2013, Stockholm County], M.e. Centrum för arbets och miljömedicin, Editor 2013. Stockholm
31.
32.
34.
go back to reference Wynn J, Aspelund G, Zygmunt A, Stolar CJ, Mychaliska G, Butcher J, Lim FY, Gratton T, Potoka D, Brennan K, Azarow K, Jackson B, Needelman H, Crombleholme T, Zhang Y, Duong J, Arkovitz MS, Chung WK, Farkouh C (2013) Developmental outcomes of children with congenital diaphragmatic hernia: a multicenter prospective study. J Pediatr Surg 48(10):1995–2004. doi:10.1016/j.jpedsurg.2013.02.041 CrossRefPubMed Wynn J, Aspelund G, Zygmunt A, Stolar CJ, Mychaliska G, Butcher J, Lim FY, Gratton T, Potoka D, Brennan K, Azarow K, Jackson B, Needelman H, Crombleholme T, Zhang Y, Duong J, Arkovitz MS, Chung WK, Farkouh C (2013) Developmental outcomes of children with congenital diaphragmatic hernia: a multicenter prospective study. J Pediatr Surg 48(10):1995–2004. doi:10.​1016/​j.​jpedsurg.​2013.​02.​041 CrossRefPubMed
37.
go back to reference Lally KP, Lally PA, Lasky RE, Tibboel D, Jaksic T, Wilson JM, Frenckner B, Van Meurs KP, Bohn DJ, Davis CF, Hirschl RB (2007) Defect size determines survival in infants with congenital diaphragmatic hernia. Pediatrics 120(3):e651–e657. doi:10.1542/peds.2006-3040 CrossRefPubMed Lally KP, Lally PA, Lasky RE, Tibboel D, Jaksic T, Wilson JM, Frenckner B, Van Meurs KP, Bohn DJ, Davis CF, Hirschl RB (2007) Defect size determines survival in infants with congenital diaphragmatic hernia. Pediatrics 120(3):e651–e657. doi:10.​1542/​peds.​2006-3040 CrossRefPubMed
38.
go back to reference Montgomery F, Willner S (1997) The natural history of idiopathic scoliosis. Incidence of treatment in 15 cohorts of children born between 1963 and 1977. Spine 22(7):772–774CrossRefPubMed Montgomery F, Willner S (1997) The natural history of idiopathic scoliosis. Incidence of treatment in 15 cohorts of children born between 1963 and 1977. Spine 22(7):772–774CrossRefPubMed
Metadata
Title
Self-assessed physical health among children with congenital diaphragmatic hernia
Authors
Elin Öst
Maria Öjmyr Joelsson
Carmen Mesas Burgos
Björn Frenckner
Publication date
01-05-2016
Publisher
Springer Berlin Heidelberg
Published in
Pediatric Surgery International / Issue 5/2016
Print ISSN: 0179-0358
Electronic ISSN: 1437-9813
DOI
https://doi.org/10.1007/s00383-016-3879-0

Other articles of this Issue 5/2016

Pediatric Surgery International 5/2016 Go to the issue