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Postoperative morbidity and health-related quality of life in children with delayed reconstruction of esophageal atresia : a nationwide Swedish study

Dellenmark-Blom, Michaela ; Örnö Ax, Sofie ; Öst, Elin ; Svensson, Jan F. ; Kassa, Ann Marie ; Jönsson, Linus ; Abrahamsson, Kate ; Gatzinsky, Vladimir ; Stenström, Pernilla LU orcid and Tollne, Anna Maria , et al. (2022) In Orphanet Journal of Rare Diseases 17(1).
Abstract

Background: In 10–15% of children with esophageal atresia (EA) delayed reconstruction of esophageal atresia (DREA) is necessary due to long-gap EA and/or prematurity/low birth weight. They represent a patient subgroup with high risk of complications. We aimed to evaluate postoperative morbidity and health-related quality of life (HRQOL) in a Swedish national cohort of children with DREA. Methods: Postoperative morbidity, age-specific generic HRQOL (PedsQL™ 4.0) and condition-specific HRQOL (The EA-QOL questionnaires) in children with DREA were compared with children with EA who had primary anastomosis (PA). Factors associated with the DREA group’s HRQOL scores were analyzed using Mann–Whitney U-test and Spearman’s rho.... (More)

Background: In 10–15% of children with esophageal atresia (EA) delayed reconstruction of esophageal atresia (DREA) is necessary due to long-gap EA and/or prematurity/low birth weight. They represent a patient subgroup with high risk of complications. We aimed to evaluate postoperative morbidity and health-related quality of life (HRQOL) in a Swedish national cohort of children with DREA. Methods: Postoperative morbidity, age-specific generic HRQOL (PedsQL™ 4.0) and condition-specific HRQOL (The EA-QOL questionnaires) in children with DREA were compared with children with EA who had primary anastomosis (PA). Factors associated with the DREA group’s HRQOL scores were analyzed using Mann–Whitney U-test and Spearman’s rho. Clinical data was extracted from the medical records. Significance level was p < 0.05. Results: Thirty-four out of 45 families of children with DREA were included and 30 returned the questionnaires(n = 8 children aged 2–7 years; n = 22 children aged 8–18 years). Compared to children with PA(42 children aged 2–7 years; 64 children aged 8–18 years), there were no significant differences in most early postoperative complications. At follow-up, symptom prevalence in children aged 2–7 with DREA ranged from 37.5% (heartburn) to 75% (cough). Further digestive and respiratory symptoms were present in ≥ 50%. In children aged 8–18, it ranged from 14.3% (vomiting) to 40.9% (cough), with other digestive and airway symptoms present in 19.0–27.3%. Except for chest tightness (2–7 years), there were no significant differences in symptom prevalence between children with DREA and PA, nor between their generic or condition-specific HRQOL scores (p > 0.05). More children with DREA underwent esophageal dilatations (both age groups), gastrostomy feeding (2–7 years), and antireflux treatment (8–18 years), p < 0.05. Days to hospital discharge after EA repair and a number of associated anomalies showed a strong negative correlation with HRQOL scores (2–7 years). Presence of cough, airway infection, swallowing difficulties and heartburn were associated with lower HRQOL scores (8–18 years), p < 0.05. Conclusions: Although children with DREA need more treatments, they are not a risk group for postoperative morbidity and impaired HRQOL compared with children with PA. However, those with a long initial hospital stay, several associated anomalies and digestive or respiratory symptoms risk worse HRQOL. This is important information for clinical practice, families and patient stakeholders.

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Contribution to journal
publication status
published
subject
keywords
Delayed reconstruction, Esophageal atresia, Health-related quality of life, Long-gap esophageal atresia, Long-term morbidity, Postoperative outcomes
in
Orphanet Journal of Rare Diseases
volume
17
issue
1
article number
239
publisher
BioMed Central (BMC)
external identifiers
  • pmid:35725462
  • scopus:85132285573
ISSN
1750-1172
DOI
10.1186/s13023-022-02381-y
language
English
LU publication?
yes
id
b1fbb7a0-d4f5-4137-a11e-ada98c95397e
date added to LUP
2022-09-30 14:24:36
date last changed
2024-04-14 13:26:32
@article{b1fbb7a0-d4f5-4137-a11e-ada98c95397e,
  abstract     = {{<p>Background: In 10–15% of children with esophageal atresia (EA) delayed reconstruction of esophageal atresia (DREA) is necessary due to long-gap EA and/or prematurity/low birth weight. They represent a patient subgroup with high risk of complications. We aimed to evaluate postoperative morbidity and health-related quality of life (HRQOL) in a Swedish national cohort of children with DREA. Methods: Postoperative morbidity, age-specific generic HRQOL (PedsQL<sup>™</sup> 4.0) and condition-specific HRQOL (The EA-QOL questionnaires) in children with DREA were compared with children with EA who had primary anastomosis (PA). Factors associated with the DREA group’s HRQOL scores were analyzed using Mann–Whitney U-test and Spearman’s rho. Clinical data was extracted from the medical records. Significance level was p &lt; 0.05. Results: Thirty-four out of 45 families of children with DREA were included and 30 returned the questionnaires(n = 8 children aged 2–7 years; n = 22 children aged 8–18 years). Compared to children with PA(42 children aged 2–7 years; 64 children aged 8–18 years), there were no significant differences in most early postoperative complications. At follow-up, symptom prevalence in children aged 2–7 with DREA ranged from 37.5% (heartburn) to 75% (cough). Further digestive and respiratory symptoms were present in ≥ 50%. In children aged 8–18, it ranged from 14.3% (vomiting) to 40.9% (cough), with other digestive and airway symptoms present in 19.0–27.3%. Except for chest tightness (2–7 years), there were no significant differences in symptom prevalence between children with DREA and PA, nor between their generic or condition-specific HRQOL scores (p &gt; 0.05). More children with DREA underwent esophageal dilatations (both age groups), gastrostomy feeding (2–7 years), and antireflux treatment (8–18 years), p &lt; 0.05. Days to hospital discharge after EA repair and a number of associated anomalies showed a strong negative correlation with HRQOL scores (2–7 years). Presence of cough, airway infection, swallowing difficulties and heartburn were associated with lower HRQOL scores (8–18 years), p &lt; 0.05. Conclusions: Although children with DREA need more treatments, they are not a risk group for postoperative morbidity and impaired HRQOL compared with children with PA. However, those with a long initial hospital stay, several associated anomalies and digestive or respiratory symptoms risk worse HRQOL. This is important information for clinical practice, families and patient stakeholders.</p>}},
  author       = {{Dellenmark-Blom, Michaela and Örnö Ax, Sofie and Öst, Elin and Svensson, Jan F. and Kassa, Ann Marie and Jönsson, Linus and Abrahamsson, Kate and Gatzinsky, Vladimir and Stenström, Pernilla and Tollne, Anna Maria and Omling, Erik and Engstrand Lilja, Helene}},
  issn         = {{1750-1172}},
  keywords     = {{Delayed reconstruction; Esophageal atresia; Health-related quality of life; Long-gap esophageal atresia; Long-term morbidity; Postoperative outcomes}},
  language     = {{eng}},
  number       = {{1}},
  publisher    = {{BioMed Central (BMC)}},
  series       = {{Orphanet Journal of Rare Diseases}},
  title        = {{Postoperative morbidity and health-related quality of life in children with delayed reconstruction of esophageal atresia : a nationwide Swedish study}},
  url          = {{http://dx.doi.org/10.1186/s13023-022-02381-y}},
  doi          = {{10.1186/s13023-022-02381-y}},
  volume       = {{17}},
  year         = {{2022}},
}