Eur J Pediatr Surg
DOI: 10.1055/s-0043-1777100
Original Article

Selection of Quality Indicators to Evaluate Quality of Care for Patients with Esophageal Atresia Using a Delphi Method

1   EPSA|ERNICA Registry, European Reference Network for Rare Inherited and Congenital Anomalies, Rotterdam, the Netherlands
2   Dutch Institute for Clinical Auditing, Leiden, the Netherlands
3   Department of Pediatric Surgery, Erasmus Medical Center, Rotterdam, the Netherlands
,
Julia Brendel
1   EPSA|ERNICA Registry, European Reference Network for Rare Inherited and Congenital Anomalies, Rotterdam, the Netherlands
4   Department of Pediatric Surgery, Hannover Medical School, Hannover, Niedersachsen, Germany
,
L.W Ernest van Heurn
1   EPSA|ERNICA Registry, European Reference Network for Rare Inherited and Congenital Anomalies, Rotterdam, the Netherlands
5   Department of Pediatric Surgery, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam & Vrije Universiteit Amsterdam, Amsterdam, the Netherlands
6   Amsterdam Reproduction and Development Research Institute, Amsterdam, the Netherlands
,
Benno Ure
4   Department of Pediatric Surgery, Hannover Medical School, Hannover, Niedersachsen, Germany
,
Rene Wijnen
1   EPSA|ERNICA Registry, European Reference Network for Rare Inherited and Congenital Anomalies, Rotterdam, the Netherlands
3   Department of Pediatric Surgery, Erasmus Medical Center, Rotterdam, the Netherlands
,
1   EPSA|ERNICA Registry, European Reference Network for Rare Inherited and Congenital Anomalies, Rotterdam, the Netherlands
3   Department of Pediatric Surgery, Erasmus Medical Center, Rotterdam, the Netherlands
7   Developmental Biology and Cancer Research and Teaching Programme, UCL Great Ormond Street Institute of Child Health, London, United Kingdom of Great Britain and Northern Ireland
,
on behalf of the EPSA|ERNICA Registry Group, the EA Quality of Care Initiative › Author Affiliations

Abstract

Objective Survival of neonates with esophageal atresia (EA) is relatively high and stable, resulting in increased attention to optimizing care and longer-term morbidity. This study aimed to reach consensus on a quality indicator set for benchmarking EA care between hospitals, regions, or countries in a European clinical audit.

Methods Using an online Delphi method, a panel of EA health care professionals and patient representatives rated potential outcome, structure, and process indicators for EA care identified through systematic literature and guideline review on a nine-point Likert scale in three questionnaires. Items were included based on predefined criteria. In rounds 2 and 3, participants were asked to select the five to ten most essential of the included indicators.

Results An international panel of 14 patient representatives and 71 multidisciplinary health care professionals representing 41 European hospitals completed all questionnaires (response rate: 81%), eventually including 22 baseline characteristics and 32 indicators. After ranking, 10 indicators were prioritized by both stakeholder groups. In addition, each stakeholder group highly prioritized one additional indicator. Following an additional online vote by the other group, these were both added to the final set.

Conclusion This study established a core indicator set of twenty-two baseline characteristics, eight outcome indicators, one structure indicator, and three process indicators for evaluating (quality of) EA care in Europe. These indicators, covering various aspects of EA care, will be implemented in the European Pediatric Surgical Audit to enable recognition of practice variation and focus EA care improvement initiatives.

# See the online Supplementary Appendix for a list of the EPSA|ERNICA Registry Group members and their affiliated hospitals.


* See the online Supplementary Appendix for a list of the EA Quality of Care Initiative members and their affiliated hospitals or organizations.


Supplementary Material



Publication History

Received: 19 May 2023

Accepted: 21 September 2023

Article published online:
12 December 2023

© 2023. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 
  • References

  • 1 Nassar N, Leoncini E, Amar E. et al. Prevalence of esophageal atresia among 18 international birth defects surveillance programs. Birth Defects Res A Clin Mol Teratol 2012; 94 (11) 893-899
  • 2 Bell JC, Baynam G, Bergman JEH. et al. Survival of infants born with esophageal atresia among 24 international birth defects surveillance programs. Birth Defects Res 2021; 113 (12) 945-957
  • 3 Beck N, van Bommel AC, Eddes EH, van Leersum NJ, Tollenaar RA, Wouters MW. Dutch Clinical Auditing Group. The Dutch Institute for Clinical Auditing: achieving Codman's dream on a nationwide basis. Ann Surg 2020; 271 (04) 627-631
  • 4 Voeten SC, Krijnen P, Voeten DM, Hegeman JH, Wouters MWJM, Schipper IB. Quality indicators for hip fracture care, a systematic review. Osteoporos Int 2018; 29 (09) 1963-1985
  • 5 Courrech Staal EFW, Wouters MWJM, Boot H, Tollenaar RAEM, van Sandick JW. Quality-of-care indicators for oesophageal cancer surgery: a review. Eur J Surg Oncol 2010; 36 (11) 1035-1043
  • 6 van Heurn E, de Blaauw I, Heij H. et al. Quality measurement in neonatal surgical disorders: development of clinical indicators. Eur J Pediatr Surg 2015; 25 (06) 526-531
  • 7 Sinha IP, Smyth RL, Williamson PR. Using the Delphi technique to determine which outcomes to measure in clinical trials: recommendations for the future based on a systematic review of existing studies. PLoS Med 2011; 8 (01) e1000393
  • 8 Boulkedid R, Abdoul H, Loustau M, Sibony O, Alberti C. Using and reporting the Delphi method for selecting healthcare quality indicators: a systematic review. PLoS One 2011; 6 (06) e20476
  • 9 Dalkey N. An experimental study of group opinion. Futures 1969; 1 (05) 408-426 DOI: 10.1016/S0016-3287(69)80025-X.
  • 10 Hsu CC, Sanddford BA. The Delphi technique: making sense of consensus. Pract. Assess. Res. Evaluation 2007; 12: 1-8
  • 11 Teunissen N, Brendel J, Eaton S. et al. Variability in the reporting of baseline characteristics, treatment, and outcomes in esophageal atresia publications: a systematic review. Eur J Pediatr Surg 2023; 33 (02) 129-137
  • 12 Krishnan U, Mousa H, Dall'Oglio L. et al. ESPGHAN-NASPGHAN Guidelines for the evaluation and treatment of gastrointestinal and nutritional complications in children with esophageal atresia-tracheoesophageal fistula. J Pediatr Gastroenterol Nutr 2016; 63 (05) 550-570
  • 13 Dingemann C, Eaton S, Aksnes G. et al. ERNICA Consensus Conference on the management of patients with esophageal atresia and tracheoesophageal fistula: diagnostics, preoperative, operative, and postoperative management. Eur J Pediatr Surg 2020; 30 (04) 326-336
  • 14 Dingemann C, Eaton S, Aksnes G. et al. ERNICA Consensus Conference on the management of patients with esophageal atresia and tracheoesophageal fistula: follow-up and framework. Eur J Pediatr Surg 2020; 30 (06) 475-482 . Doi: 4
  • 15 Donabedian A. Evaluating the quality of medical care. 1966. Milbank Q 2005; 83 (04) 691-729
  • 16 Welphi. Welphi Online Survey Platform. Accessed October 25, 2022 at: www.welphi.com
  • 17 Iqbal S, Pipon-Young L. The Delphi Method. Psychol 2009; 22 (07) 598-601
  • 18 Busweiler LAD, Wijnhoven BPL, van Berge Henegouwen MI. et al; Dutch Upper Gastrointestinal Cancer Audit (DUCA) Group. Early outcomes from the Dutch Upper Gastrointestinal Cancer Audit. Br J Surg 2016; 103 (13) 1855-1863
  • 19 Stordeur S, Vlayen J, Vrijens F. et al. Quality indicators for oesophageal and gastric cancer: a population-based study in Belgium, 2004-2008. Eur J Cancer Care (Engl) 2015; 24 (03) 376-386
  • 20 Posada de la Paz M, Groft SC. . Rare Diseases Epidemiology. Vol 686. (Posada de la Paz M, Groft SC, eds.). The Netherlands: Springer; 2010. DOI: 10.1007/978-90-481-9485-8
  • 21 Thursfield RM, Gorst S, Adams A, Losty P, Hopwood L, Slater G. Establishing Core Outcomes to Improve Quality Health Care For Patients Born With Oesophageal Atresia (OA) And Tracheoesophageal Fistula (TOFS). [Submitted]
  • 22 Williamson PR, Altman DG, Bagley H. et al. The COMET Handbook: version 1.0. Trials 2017; 18 (Suppl. 03) 280 DOI: 10.1186/s13063-017-1978-4.