P-23: Quality of Life in Children with Eosinophilic Esophagitis Associated With Esophageal Atresia and Tracheoesophageal Fistula

2016 ◽  
Vol 29 (3) ◽  
pp. 294-295 ◽  
Author(s):  
U.K. Krishnan ◽  
L.M. McLennan ◽  
J.C. Li Chan ◽  
C.C. Clarkson ◽  
J.M. Menzies ◽  
...  
2017 ◽  
Vol 266 (2) ◽  
pp. 305-310 ◽  
Author(s):  
Waleed Gibreel ◽  
Benjamin Zendejas ◽  
Ryan M. Antiel ◽  
Geoffrey Fasen ◽  
Christopher R. Moir ◽  
...  

2018 ◽  
Vol 29 (01) ◽  
pp. 125-131 ◽  
Author(s):  
Vanita Kumari ◽  
Anjan Dhua ◽  
Savita Sapra ◽  
Maddur Srinivas ◽  
Sandeep Agarwala ◽  
...  

Introduction Esophageal atresia with or without tracheoesophageal fistula (EA with or without TEF) is one of the neonatal surgical emergencies requiring surgical intervention in the early neonatal period, influencing the developmental outcome in the operated children. This study was aimed to assess the developmental status of children operated for EA with or without TEF along with maternal stress, their quality of life (QOL), and coping abilities. Materials and Methods A descriptive cross-sectional survey was conducted on 51 children aged up to 5 years after EA with or without TEF repair and their mothers' in a tertiary care facility. The tools used were, namely, demographic datasheet of child and mother, anthropometry assessment, Developmental Assessment Scale for Indian Infants, and modified Vineland Social Maturity Scale for the developmental evaluation, Child Behavior Checklist (1.5–5 years) caregiver report form, Parental Stress Scale, WHOQOL BREF, and Coping Strategies Checklist. Results The majority of children had low weight (47.1%) and height (31.4%), for reference age. The overall and social developmental delay was observed in 40.7 and 37.5% of children, respectively, and few children (7.4%) had behavioral problems in the borderline range. Among the mothers, 47% had moderate stress and relatively poor QOL in environmental (60.1 ± 18.9) and psychological (60.8 ± 18.8) domains. The most commonly used coping strategy by the mothers was an emotional outlet (29.4%). Conclusion Developmental delay was present in children operated for EA with or without TEF caused significant stress among mothers, affecting their QOL for which the emotional outlet was the most commonly used coping strategy.


2018 ◽  
Vol 29 (01) ◽  
pp. 075-084 ◽  
Author(s):  
Sofie Flieder ◽  
Michaela Dellenmark-Blom ◽  
Stefanie Witt ◽  
Carmen Dingemann ◽  
Julia Quitmann ◽  
...  

Aim Despite advances of outcomes of esophageal atresia (EA), knowledge on patients' health-related quality of life (HRQoL) is sparse. Due to the heterogeneity of EA, larger cohorts need to be investigated to ensure reliability of data. Aim was to determine generic HRQoL after EA repair in a Swedish–German cohort. Patients and Methods Ethical approval was obtained. A total of 192 patients (2–18 years; 134 Swedish; 58 German) were included. Clinical data were reviewed. EA was classified in “severe” and “mild/moderate.” Pediatric Quality of Life Inventory 4.0 Generic Core Scale (PedsQL 4.0) was used in appropriate versions (2–7 years; 8–18 years; self- [SR] and proxy report [PR]) to determine generic HRQoL. Results Swedish and German samples were clinically and demographically comparable. HRQoL was lower in “severe EA” versus “mild/moderate” (2–18 years; total score; PR 85.6 vs. 73.6; p < 0.001) and Gross A versus Gross C type EA (2–7 years; total score; PR 61.0 vs. 79.3; p = 0.035). Total HRQoL was higher in the Swedish versus German sample (2–18 years; total score; PR 82.3 vs. 72.7; p = 0.002). HRQoL was impaired in the German sample versus healthy population (2–18 years; total score; PR 72.7 vs. 82.7; p = 0.001). In German patients (8–18 years), HRQoL was higher in SR versus PR (80.7 vs. 74.7; p = 0.044). Patients' age and presence of VACTERL association or isolated anorectal malformations did not affect HRQoL. Various differences were detected regarding different dimensions of PedsQL 4.0. Conclusion In this first international study, we found several differences in perception of generic HRQoL. HRQoL appears to be determined by the type of EA and severity rather than patients' age or the presence of typical associated malformations. Country-specific differences may be culturally dependent, but further investigations are suggested. A condition-specific instrument validated for EA may provide additional insights.


2018 ◽  
Vol 29 (04) ◽  
pp. 371-377 ◽  
Author(s):  
Stefanie Witt ◽  
Michaela Dellenmark-Blom ◽  
Jens Dingemann ◽  
Carmen Dingemann ◽  
Benno M. Ure ◽  
...  

Introduction For parents of chronically ill children, the experiences of caregiving are challenged by increased demands and restrictions imposed by their child's disease. Therefore, this study aims to investigate the quality of life (QoL) in parents of children born with esophageal atresia (EA) and to explore associated factors. Materials and Methods Parents of children (2–17 years) with EA recruited from two German pediatric hospitals participated in this cross-sectional study about QoL in EA. Data on QoL, sociodemographic, and clinical characteristics were collected from parents and children. Parental QoL was assessed using the Short-Form 8 questionnaire, containing eight dimensions aggregated to a mental and physical health summary score which was compared with German representative population norms. Results Forty-nine families (47 mothers and 40 fathers) participated in the study. Compared with German population norms, both mothers and fathers showed significantly lower mental component score (MCS) but no differences in physical component score (PCS). Within the study sample, parents of younger children (2–7 years), severe EA, or high school/kindergarten absence had lower MCSs compared with those with older, less severe, and less absent children. Parental female gender was associated with lower MCS as well as lower family income. Conclusion Parents of children with EA reported lower mental health compared with the general population, especially mothers, and parents of young children, with severe EA, and a frequent school/kindergarten absence. This shows that parents may experience substantial emotional burden and highlights the need for psychosocial support for EA parents, especially in the first years.


Author(s):  
Martina CAPITANIO ◽  
Riccardo GUANÁ ◽  
Salvatore GAROFALO ◽  
Federico SCOTTONI ◽  
Maria Grazia CORTESE ◽  
...  

2020 ◽  
Vol 158 (6) ◽  
pp. S-825-S-826
Author(s):  
Matteo Ghisa ◽  
Giorgio Laserra ◽  
Carla Marinelli ◽  
Brigida Barberio ◽  
Salvatore Tolone ◽  
...  

2018 ◽  
Vol 154 (6) ◽  
pp. S-257-S-258
Author(s):  
Caitlin T. Sullivan ◽  
Emily C. McGowan ◽  
Bryan G. Sauer

Sign in / Sign up

Export Citation Format

Share Document