Skip to main content
SpringerLink
Log in

Self-assessed physical health among children with congenital diaphragmatic hernia

  • Original Article
  • Published:
Pediatric Surgery International Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. 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

    Article  PubMed  Google Scholar 

  2. 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):287–291

    PubMed  Google Scholar 

  3. 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):1185–1189

    Article  CAS  PubMed  Google Scholar 

  4. Antonoff MB, Hustead VA, Groth SS, Schmeling DJ (2011) Protocolized management of infants with congenital diaphragmatic hernia: effect on survival. J Pediatr Surg 46(1):39–46. doi:10.1016/j.jpedsurg.2010.09.060

    Article  PubMed  Google Scholar 

  5. Tracy ET, Mears SE, Smith PB, Danko ME, Diesen DL, Fisher KA, Hoehner JC, Goldberg RN, Cotten CM, Rice HE (2010) Protocolized approach to the management of congenital diaphragmatic hernia: benefits of reducing variability in care. J Pediatr Surg 45(6):1343–1348. doi:10.1016/j.jpedsurg.2010.02.104

    Article  PubMed  PubMed Central  Google Scholar 

  6. 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

    Article  PubMed  Google Scholar 

  7. 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

    Article  PubMed  Google Scholar 

  8. Lally KP, Engle W (2008) Postdischarge follow-up of infants with congenital diaphragmatic hernia. Pediatrics 121(3):627–632. doi:10.1542/peds.2007-3282

    Article  PubMed  Google Scholar 

  9. 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

    Article  PubMed  Google Scholar 

  10. 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  Google Scholar 

  11. 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

    Article  PubMed  Google Scholar 

  12. 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

    Article  PubMed  Google Scholar 

  13. 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

    Article  CAS  PubMed  Google Scholar 

  14. Frisk V, Jakobson LS, Unger S, Trachsel D, O’Brien K (2011) Long-term neurodevelopmental outcomes of congenital diaphragmatic hernia survivors not treated with extracorporeal membrane oxygenation. J Pediatr Surg 46(7):1309–1318. doi:10.1016/j.jpedsurg.2010.12.023

    Article  PubMed  Google Scholar 

  15. 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)

    Article  PubMed  Google Scholar 

  16. 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

    Article  CAS  PubMed  Google Scholar 

  17. Kuklova P, Zemkova D, Kyncl M, Pycha K, Stranak Z, Melichar J, Snajdauf J, Rygl M (2011) Large diaphragmatic defect: are skeletal deformities preventable? Pediatr Surg Int 27(12):1343–1349. doi:10.1007/s00383-011-2973-6

    Article  CAS  PubMed  Google Scholar 

  18. Jancelewicz T, Chiang M, Oliveira C, Chiu PP (2013) Late surgical outcomes among congenital diaphragmatic hernia (CDH) patients: why long-term follow-up with surgeons is recommended. J Pediatr Surg 48(5):935–941. doi:10.1016/j.jpedsurg.2013.02.005

    Article  PubMed  Google Scholar 

  19. Ijsselstijn H, van Heijst AF (2014) Long-term outcome of children treated with neonatal extracorporeal membrane oxygenation: increasing problems with increasing age. Semin Perinatol 38(2):114–121. doi:10.1053/j.semperi.2013.11.009

    Article  PubMed  Google Scholar 

  20. ECMO extracorporeal cardiopulomnary support in critical care (2012) 4th edn. Extracorporeal Life Support Organization, USA

    Google Scholar 

  21. 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):739–754

    Article  Google Scholar 

  22. de Onis M, Garza C, Onyango AW, Rolland-Cachera MF (2009) WHO growth standards for infants and young children. Archives de pediatrie: organe officiel de la Societe francaise de pediatrie 16(1):47–53. doi:10.1016/j.arcped.2008.10.010

    Article  Google Scholar 

  23. 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

    Article  Google Scholar 

  24. What is health? The ability to adapt (2009). Lancet (London, England) 373 (9666):781. doi:10.1016/s0140-6736(09)60456-6

  25. 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

    Article  Google Scholar 

  26. Black N (2013) Patient reported outcome measures could help transform healthcare. BMJ Clin Res Ed 346:f167. doi:10.1136/bmj.f167

    Google Scholar 

  27. Freyschuss U, Lannergren K, Frenckner B (1984) Lung function after repair of congenital diaphragmatic hernia. Acta paediatrica Scandinavica 73(5):589–593

    Article  CAS  PubMed  Google Scholar 

  28. 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):405–414

    Article  CAS  PubMed  Google Scholar 

  29. 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

  30. Wilson MG, Riley P, Hurteau AM, Baird R, Puligandla PS (2013) Hearing loss in congenital diaphragmatic hernia (CDH) survivors: is it as prevalent as we think? J Pediatr Surg 48(5):942–945. doi:10.1016/j.jpedsurg.2013.02.007

    Article  PubMed  Google Scholar 

  31. Safavi A, Synnes AR, O’Brien K, Chiang M, Skarsgard ED, Chiu PP (2012) Multi-institutional follow-up of patients with congenital diaphragmatic hernia reveals severe disability and variations in practice. J Pediatr Surg 47(5):836–841. doi:10.1016/j.jpedsurg.2012.01.032

    Article  PubMed  Google Scholar 

  32. Berninger E, Westling B (2011) Outcome of a universal newborn hearing-screening programme based on multiple transient-evoked otoacoustic emissions and clinical brainstem response audiometry. Acta Otolaryngol 131(7):728–739. doi:10.3109/00016489.2011.554440

    Article  PubMed  Google Scholar 

  33. Larsson K, Eeg-Olofsson O (2006) A population based study of epilepsy in children from a Swedish county. Eur J Paediatr Neurol EJPN Off J Eur Paediatr Neurol Soc 10(3):107–113. doi:10.1016/j.ejpn.2006.02.005

    Article  Google Scholar 

  34. 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

    Article  PubMed  Google Scholar 

  35. Danzer E, Kim SS (2014) Neurodevelopmental outcome in congenital diaphragmatic hernia: evaluation, predictors and outcome. World J Clin Pediatr 3(3):30–36. doi:10.5409/wjcp.v3.i3.30

    Article  PubMed  PubMed Central  Google Scholar 

  36. Gillberg C (2010) The ESSENCE in child psychiatry: early symptomatic syndromes eliciting neurodevelopmental clinical examinations. Res Dev Disabil 31(6):1543–1551. doi:10.1016/j.ridd.2010.06.002

    Article  PubMed  Google Scholar 

  37. 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

    Article  PubMed  Google Scholar 

  38. 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):772–774

    Article  CAS  PubMed  Google Scholar 

Download references

Acknowledgments

This study was supported with Grants from HRH Crown Princess Lovisa´s Foundation, Majblomman and Kempe Carlgrenska Foundation.

Author information

Authors and Affiliations

  1. Department of Women’s and Children’s Health, Karolinska Institutet, 171 77, Stockholm, Sweden

    Elin Öst, Maria Öjmyr Joelsson, Carmen Mesas Burgos & Björn Frenckner

  2. Pediatric Surgery Unit, Karolinska University Hospital, Astrid Lindgren Children’s Hospital, 171 76, Stockholm, Sweden

    Elin Öst, Maria Öjmyr Joelsson, Carmen Mesas Burgos & Björn Frenckner

Authors
  1. Elin Öst
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Maria Öjmyr Joelsson
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Carmen Mesas Burgos
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Björn Frenckner
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Elin Öst.

Appendices

Appendix 1

figure a
figure b
figure c

Appendix 2

Comparison between children born with CDH in 1990 and 2000. No statistical difference between the groups in any of the domains.

 

N

Age (years)

Pulm (%)

Gastro (%)

Neuro (%)

Musculo (%)

1990

62 (57 %)

13–23

16

13

21

6

2000

47 (43 %)

2–12

21

23

25

12

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Öst, E., Joelsson, M.Ö., Burgos, C.M. et al. Self-assessed physical health among children with congenital diaphragmatic hernia. Pediatr Surg Int 32, 493–503 (2016). https://doi.org/10.1007/s00383-016-3879-0

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00383-016-3879-0

Keywords

Search

Navigation