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Long-Term Outcomes of Patients with Tracheoesophageal Fistula/Esophageal Atresia: Survey Results from Tracheoesophageal Fistula/Esophageal Atresia Online Communities
14 August 2015
07 November 2015
21 December 2015 (online)
Introduction Outcome studies of tracheoesophageal fistula (TEF) and/or esophageal atresia (EA) are limited to retrospective chart reviews. This study surveyed TEF/EA patients/parents engaged in social media communities to determine long-term outcomes.
Materials and Methods A 50-point survey was designed to study presentation, interventions, and ongoing symptoms after repair in patients with TEF/EA. It was validated using a test population and made available on TEF/EA online communities.
Results In this study, 445 subjects completed the survey during a 2-month period. Mean age of patients when surveyed was 8.7 years (0–61 years) and 56% were male. Eighty-nine percent of surveys were completed by the parent of the patient. Sixty-two percent of patients underwent repair in the first 7 days of life. Standard open repair was most common (56%), followed by primary esophageal replacement (13%) and thoracoscopic repair (13%). Out of 405, 106 (26%) patients had postoperative leak. Postoperative leak was least likely in primary esophageal replacement (18%) and standard open repair (19%). Leak occurred in 32% of patients who had thoracoscopic repair; 31% (128/413) reported long-gap atresia, which was significantly associated with increased risk of postoperative leak (54/128, 42%) when compared with standard short-gap atresia (odds ratio, 3.5; p = 0.001). Out of 409, 221 (54%) patients reported dysphagia after repair, with only 77/221 (34.8%) reporting resolution by age 5. Out of 381, 290 (76%) patients reported symptoms of gastroesophageal reflux disease (GERD). There was no difference in dysphagia rates or GERD symptoms based on type of initial repair. Antireflux surgery was required in 63/290, 22% of patients with GERD (15% of all patients) and 27% of these patients who had surgery required more than one procedure antireflux procedure. The most common was Nissen fundoplication (73%), followed by partial wrap (14%). Reflux recurred in 32% of patients after antireflux surgery.
Conclusion TEF/EA patients have long-term dysphagia and GERD that may be under reported. Retrospective studies of outcomes after TEF/EA repair may underestimate long-term esophageal dysmotility, dysphagia, GERD, and strictures that occur regardless of the type of repair and adversely affect quality of life. Fifteen percent of all TEF/EA patients surveyed required an antireflux procedure during childhood, and more than one-quarter of those required repeat surgery. These data demonstrate the need for long-term follow-up as pediatric patients transition to adult care.
- 1 Alshaikh F, Ramzan F, Rawaf S, Majeed A. Social network sites as a mode to collect health data: a systematic review. J Med Internet Res 2014; 16 (7) e171
- 2 Capurro D, Cole K, Echavarría MI, Joe J, Neogi T, Turner AM. The use of social networking sites for public health practice and research: a systematic review. J Med Internet Res 2014; 16 (3) e79
- 3 Rothenberg SS. Esophageal atresia and tracheoesphageal fistula malformations. In: Holcomb G, Murphy P, Ostlie D, eds. Ashcraft's Pediatric Surgery. 6th ed. Philadelphia, PA: Elsevier; 2014: 365-384
- 4 Depaepe A, Dolk H, Lechat MF ; EUROCAT Working Group. The epidemiology of tracheo-oesophageal fistula and oesophageal atresia in Europe. Arch Dis Child 1993; 68 (6) 743-748
- 5 Harmon C, Coran AG. Congenital anomalies of the esophagus. In: O'Neill JA, Rowe MI, Grosfeld JL, eds. Pediatric Surgery. 5th ed. St. Louis, MO: Mosby; 1998: 941-967
- 6 Engum SA, Grosfeld JL, West KW, Rescorla FJ, Scherer III LR. Analysis of morbidity and mortality in 227 cases of esophageal atresia and/or tracheoesophageal fistula over two decades. Arch Surg 1995; 130 (5) 502-508 , discussion 508–509
- 7 Konkin DE, O'hali WA, Webber EM, Blair GK. Outcomes in esophageal atresia and tracheoesophageal fistula. J Pediatr Surg 2003; 38 (12) 1726-1729
- 8 Legrand C, Michaud L, Salleron J , et al. Long-term outcome of children with oesophageal atresia type III. Arch Dis Child 2012; 97 (9) 808-811
- 9 Romeo C, Bonanno N, Baldari S , et al. Gastric motility disorders in patients operated on for esophageal atresia and tracheoesophageal fistula: long-term evaluation. J Pediatr Surg 2000; 35 (5) 740-744
- 10 Tomaselli V, Volpi ML, Dell'Agnola CA, Bini M, Rossi A, Indriolo A. Long-term evaluation of esophageal function in patients treated at birth for esophageal atresia. Pediatr Surg Int 2003; 19 (1–2) 40-43
- 11 Jolley SG, Johnson DG, Roberts CC , et al. Patterns of gastroesophageal reflux in children following repair of esophageal atresia and distal tracheoesophageal fistula. J Pediatr Surg 1980; 15 (6) 857-862
- 12 Taylor AC, Breen KJ, Auldist A , et al. Gastroesophageal reflux and related pathology in adults who were born with esophageal atresia: a long-term follow-up study. Clin Gastroenterol Hepatol 2007; 5 (6) 702-706
- 13 Little DC, Rescorla FJ, Grosfeld JL, West KW, Scherer LR, Engum SA. Long-term analysis of children with esophageal atresia and tracheoesophageal fistula. J Pediatr Surg 2003; 38 (6) 852-856
- 14 Koivusalo A, Pakarinen MP, Turunen P, Saarikoski H, Lindahl H, Rintala RJ. Health-related quality of life in adult patients with esophageal atresia—a questionnaire study. J Pediatr Surg 2005; 40 (2) 307-312