Health-Related Quality of Life in Patients after Repair of Esophageal Atresia: A Review of Current Literature

Dellenmark‐Blom, Michaela; Quitmann, Julia; Dingemann, Carmen

doi:10.1055/s-0040-1710389

Cited by 29 publications

(35 citation statements)

References 50 publications

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“…Other authors have already shown that long-term complications can sometimes only arise later in life; therefore, we cannot issue a final statement regarding long-term complications and HRQoL on our comparatively young patient cohort. 9,11,19,20,38,64,68 To solve this issue, longitudinal studies are warranted. These would allow changes in the prevalence of long-term complications and scores of HRQoL questionnaires to be recorded age dependently and compared at regular intervals.…”

Section: Limitationsmentioning

confidence: 99%

“…14,[26][27][28][29][30][31][32][33][34][35][36][37][38][39][40] Various conditions (e.g., low birth weight, prematurity, pulmonary symptoms, feeding difficulties), treatment options (e.g., gastrostomy insertion, esophageal replacement), and long-term complications (e.g., anastomotic stenosis requiring recurrent dilatation) have been shown to restrict the QoL or HRQoL in patients with repaired EA. 31,32,37,38,41,42 In light of the fact that parents also have to bear part of the burden of their child's disease, the impact hereof on the parents' general well-being has not been studied well. 27,35 Considering the long-term complications frequently seen during outpatient visits, we assume a reduced HRQoL in patients with repaired EA and an impact on the parents' general well-being.…”

Section: Introductionmentioning

confidence: 99%

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Long-Term Outcomes and Health-Related Quality of Life in a Swiss Patient Group with Esophageal Atresia

et al. 2021

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Introduction Surgical treatment of esophageal atresia (EA) has markedly improved, allowing the focus to shift from short-term complications and mortality to long-term complications and quality of life. Health-related quality of life (HRQoL) is variable and reported to range from reduced to unimpaired in patients with repaired EA. We assessed the HRQoL, determined the prevalence of long-term complications and their possible impact on the HRQoL in patients who had correction of EA in Switzerland. Further, we also investigated in the general well-being of their parents. Materials and Methods Patients with EA repair in Switzerland between 1985 and 2011 were enrolled. Long-term complications were assessed by enquiring disease-related symptoms, standardized clinical examinations, and analysis of radiographs. HRQoL was inquired using different validated questionnaires (KIDSCREEN-27, World Health Organization [WHO]-5, and Gastrointestinal Quality of Life Index [GIQLI]). Patients were grouped according to their age. In underage patients, general well-being of the parents was assessed using the WHO-5 questionnaire. Results Thirty patients were included with a mean age of 11.3 ± 5.7 years. Long-term complications were present in 63% of all patients. HRQoL in underage patients was comparable to the provided reference values and rated as good, while adult patients reported a reduced HRQoL. The presence of gastroesophageal reflux disease symptoms was associated with reduced HRQoL in underage patients. Parents of underage patients stated a good general well-being. Conclusion Long-term complications among patients with repair of EA in Switzerland are common. HRQoL in underage patients is good and general well-being of their parents is unimpaired. Adult patients reported a reduced HRQoL, consistent with other reports. As long-term complications may manifest only later in life, a structured follow-up of patients with an EA repair during childhood and adolescence is needed.

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Section: Limitationsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Long-Term Outcomes and Health-Related Quality of Life in a Swiss Patient Group with Esophageal Atresia

et al. 2021

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“…An elaborate review on the health-related quality of life (HrQOL) of patients born with esophageal atresia showed that these patients experience a lower quality of life as compared to their peers. [50]…”

Section: Long-term Effects Of the Repeated Hospitalization And Anesthesia Exposuresmentioning

confidence: 99%

Primary repair of esophageal atresia is followed by multiple diagnostic and surgical procedures.

Hoorn

Vlot

Wijnen

et al. 2021

Journal of Pediatric Surgery

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Background: Children born with esophageal atresia (EA) face comorbidities and complications often requiring surgery and anesthesia. We aimed to assess all procedures performed under general anesthesia during their first 12 years of life. Methods: We performed a retrospective cohort study about subsequent surgeries and procedures requiring general anesthesia in children born with type C EA between January 2007 and December 2017, with follow-up to March 2019. Results: Of 102 eligible patients, 63 were diagnosed with comorbidities, of whom 18 had VACTERL association. Follow-up time for all patients varied between 14 months and 12 years (median 7 years). The patients underwent total 637 procedures, median 4 [IQR2-7] per patient. In the first year of life, 464 procedures were performed, in the second year 69 and in the third year 29. Thirteen patients underwent no other procedures than primary EA repair. In 57 patients, 228 dilatations were performed. Other frequently performed procedures were esophagoscopy (n = 52), urologic procedures (n = 44) and abdominal procedures (n = 33). Conclusions: Patients with EA frequently require multiple anesthetics for a variety of procedures related to the EA, complications and comorbidities. This study can help care providers when counselling parents of a patient with an EA by giving them more insight into possible procedures they can be confronted with during childhood.

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“…Most research on long-term outcome of EA has focused on physical impairments or QOL, both in children and young adults. 5 , 6 A recent elaborate review on health related QOL (HrQOL) of patients born with EA concluded that clinical subgroups of children with EA present with impaired HrQOL, and that digestive symptomology negatively influences the HrQOL. 6 Neurodevelopment has been less well studied, and available studies reported conflicting results.…”

Section: Introductionmentioning

confidence: 99%

Long-term neurodevelopment in children born with esophageal atresia: a systematic review

Hoorn

Kate

Rietman

et al. 2021

Diseases of the Esophagus

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Summary Background Although the survival rate of esophageal atresia (EA) has increased to over 90%, the risk of functional long-term neurodevelopmental deficits is uncertain. Studies on long-term outcomes of children with EA show conflicting results. Therefore, we provide an overview of the current knowledge on the long-term neurodevelopmental outcome of children with EA. Methods We performed a structured literature search in Embase, Medline Ovid, Web of Science, Cochrane CENTRAL, and Google scholar on November 8, 2020 with the keywords ‘esophageal atresia’, ‘long-term outcome’, ‘motor development’, ‘cognitive development’, and ‘neurodevelopment’. Results The initial search identified 945 studies, of which 15 were included. Five of these published outcomes of multiple tests or tested at multiple ages. Regarding infants, one of six studies found impaired neurodevelopment at 1 year of age. Regarding preschoolers, two of five studies found impaired neurodevelopment; the one study assessing cognitive development found normal cognitive outcome. Both studies on motor function reported impairment. Regarding school-agers, the one study on neurodevelopmental outcome reported impairment. Cognitive impairment was found in two out of four studies, and motor function was impaired in both studies studying motor function. Conclusions Long-term neurodevelopment of children born with EA has been assessed with various instruments, with contrasting results. Impairments were mostly found in motor function, but also in cognitive performance. Generally, the long-term outcome of these children is reason for concern. Structured, multidisciplinary long-term follow-up programs for children born with EA would allow to timely detect neurodevelopmental impairments and to intervene, if necessary.

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Health-Related Quality of Life in Patients after Repair of Esophageal Atresia: A Review of Current Literature

Cited by 29 publications

References 50 publications

Long-Term Outcomes and Health-Related Quality of Life in a Swiss Patient Group with Esophageal Atresia

Long-Term Outcomes and Health-Related Quality of Life in a Swiss Patient Group with Esophageal Atresia

Primary repair of esophageal atresia is followed by multiple diagnostic and surgical procedures.

Long-term neurodevelopment in children born with esophageal atresia: a systematic review

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