The Esophageal‐Atresia‐Quality‐of‐life Questionnaires

Dellenmark‐Blom, Michaela; Dingemann, Jens; Witt, Stefanie; Quitmann, Julia; Jönsson, Linus; Gatzinsky, Vladimir; Chaplin, John; Bullinger, Monika; Flieder, Sofie; Ure, Benno M.; Dingemann, Carmen; Abrahamsson, Kate

doi:10.1097/mpg.0000000000002019

Cited by 38 publications

(64 citation statements)

References 42 publications

(86 reference statements)

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“…The study was a part of a Swedish-German project focusing on HRQOL in children and adolescents born with EA and their families, 9,[15][16][17] and was approved by the Ethical Review Boards of Gothenburg, Sweden (DNR 958-13) and Hannover, Germany (2936-2015).…”

Section: Methodsmentioning

confidence: 99%

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Clinical Factors Affecting Condition-Specific Quality-of-Life Domains in Pediatric Patients after Repair of Esophageal Atresia: The Swedish-German EA-QOL Study

et al. 2019

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Introduction We aimed to identify clinical factors affecting condition-specific health related quality of life (HRQOL) domains in children born with esophageal atresia (EA). This can facilitate preventive care to risk groups of HRQOL impairments. Materials and Methods A total of 124 Swedish and German families of EA children answered the validated EA-QOL questionnaires (response rate 68%), for evaluation of three HRQOL domains in children 2 to 7 years old (53 parents) and four HRQOL domains in children 8 to 17 years old (62 children/71 parents). Clinical data were collected through medical records and a questionnaire. Statistics included between—group analysis, univariable and stepwise multivariable regression analysis, p < 0.05. Results Between 2 to 7 years, no primary anastomosis (p = 0.022) and female gender (p = 0.026) predicted worse scores related to “physical health and treatment,” and gastrostomy insertion related to “eating” (p = 0.0001), and “social isolation and stress” (p = 0.001). Between 8 to 17 years, no primary anastomosis (child report), prematurity, esophageal dilatation (parent report) predicted poor HRQOL related to “eating” (p < 0.05), associated anomalies to “body perception” (p = 0.031, parent report), female gender (p = 0.018, child report) and severe EA (p = 0.011 child report, p = 0.004 parent report) to “social relationships,” and severe EA predicted worse “health and well-being” scores (p = 0.004, parent report). An increased number of digestive symptoms (difficulty swallowing food, heartburn, and vomiting), lowered all EA-QOL domain scores in both age groups (p < 0.001). An increased number of respiratory problems (cough, wheezing, airway infections. breathlessness, and chest tightness), lowered scores in two HRQOL domains among children 2 to 7 years (p < 0.05). Conclusion Impairments within condition-specific HRQOL domains in EA children are found in congenital and surgical subgroups, and notably related to digestive symptoms throughout childhood.

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Section: Methodsmentioning

confidence: 99%

“…10 In recent years, condition-specific HRQOL instruments have been developed and validated for EA patients aged 2 to 7 and 8 to 17 years. [15][16][17] These instruments evaluate the age-specific HRQOL domains as presented in ►Fig. 1.…”

Section: Introductionmentioning

confidence: 99%

Clinical Factors Affecting Condition-Specific Quality-of-Life Domains in Pediatric Patients after Repair of Esophageal Atresia: The Swedish-German EA-QOL Study

et al. 2019

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“…Information is obtained from multidimensional general or condition-specific questionnaires that integrate aspects from a physical, social, psychological, and emotional perspective. [44][45][46] While in the past condition-specific HRQoL instruments have been developed and validated for children with EA, [47][48][49] the use of general instruments has been more common, as these allow for comparison to a variety of populations, for example, a healthy control group. 44 The validated questionnaires used to assess the patient's subjective perception of health were: the KIDSCREEN-27, 50,51 the Gastrointestinal Quality of Life Index (GIQLI) 52,53 , and the World Health Organization (WHO)-5 questionnaire.…”

Section: Data Collectionmentioning

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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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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“…Esophageal atresia (EA) is a rare malformation occurring in 2.4/10 000 births. While survival rates today exceed 90%, long-term esophageal and respiratory sequelae remain common (Dellenmark-Blom et al, 2018). Although neonatal survival is no longer a problem, there is scarce data about the patients' long-term outcomes, including health-related quality of life (HRQOL) (Legrand et al, 2012).…”

Section: Introductionmentioning

confidence: 99%

“…Only one study examined differences in children's self-reports and parent proxy-reports in children with EA, which showed satisfactory agreement, but with varying results depending on the investigated HRQoL domain (Dellenmark-Blom et al, 2018;Flieder et al, 2018). However studies have shown that parents of children with chronic diseases tend to score their children's HRQOL lower than the children (She er, Hanley, Bagley, Molitor, & James, 2009), the reliability of using parent proxy-reports has been questioned (Panepinto, Hoffmann, & Pajewski, 2010).…”

Section: Introductionmentioning

confidence: 99%

Parent-Child-Agreement on Health-Related Quality of Life and its Determinants in Patients Born with Esophageal Atresia – A Swedish-German Cross-Sectional Study

Witt

Dellenmark‐Blom

Kuckuck

et al. 2020

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Background The aim was to compare parent and child reported health-related quality of life (HRQOL) of children born with esophageal atresia (EA) and to determine factors that affect the level of parent-child agreement. Methods We included 63 parent-child dyads of children born with EA aged 8-18 from Germany and Sweden. The generic PedsQL questionnaire and the condition-specific EA QOL questionnaire were used to assess children’s HRQOL from parents- and child’s perspective. The Peds QL Family Impact Module was used to assess parental HRQOL and Family Functioning.Results On an individual level, intra-class correlation coefficients indicated strong levels of parent-child agreement (.61-.97). At the group level, the analyses showed no significant differences between the responses of parents and children. In cases where disagreement occurred, parents were more likely to rate generic HRQOL lower than the children (19-35%) and condition-specific HRQOL higher than the children (17-33%). Findings of the multiple regression analysis showed that the country (Germany vs. Sweden) was found to be a significant predictor of parent-child agreement in generic HRQOL and parental HRQOL to be a significant predictor of parent-child agreement in condition-specific HRQOL.Conclusion The parent-child agreement is mostly good, suggesting that parent-reports are a reliable source of information. However, discrepancies may occur and cannot be explained by the child's age and gender, nor severity of the disease or Family Functioning, but solely by country respectively parental HRQOL. Clinicians should therefore not only observe the pediatric patient but also the parents.

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The Esophageal‐Atresia‐Quality‐of‐life Questionnaires

Abstract: The overall psychometric performance of the EA-QOL-questionnaires for EA/TEF children is satisfactory and can enhance outcome evaluations in future research and clinical practice.

Cited by 38 publications

References 42 publications

Clinical Factors Affecting Condition-Specific Quality-of-Life Domains in Pediatric Patients after Repair of Esophageal Atresia: The Swedish-German EA-QOL Study

Clinical Factors Affecting Condition-Specific Quality-of-Life Domains in Pediatric Patients after Repair of Esophageal Atresia: The Swedish-German EA-QOL Study

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

Parent-Child-Agreement on Health-Related Quality of Life and its Determinants in Patients Born with Esophageal Atresia – A Swedish-German Cross-Sectional Study

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