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  • 1
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    Gravitational Autoreposition for Staged Closure of Omphaloceles
    Georg Thieme Verlag KG ; 2020
    In:  European Journal of Pediatric Surgery Vol. 30, No. 01 ( 2020-02), p. 045-050
    Details
    In: European Journal of Pediatric Surgery, Georg Thieme Verlag KG, Vol. 30, No. 01 ( 2020-02), p. 045-050
    Abstract: Introduction Management strategies for large omphaloceles remain controversial. In this study, we discuss the use of GRAVITAS (gravitational autoreposition sutures), the method used at our institution when successful primary closure is deemed questionable. Patient's primary clinical course and long-term outcomes were analyzed. Materials and Methods This is a single-center retrospective analysis of all consecutive patients with omphaloceles treated between 1997 and 2018. Decision for GRAVITAS was made when the defect was estimated too large for primary closure. Traction sutures were placed in the fascia surrounding the defect and then suspended from the top of the incubator to allow gravitational autoreposition of the herniated organs. Ventilation and muscle relaxation were maintained until secondary closure, which was performed after the obtruding viscera had been reduced by repeated adjustment of the suture's tension. Data are presented as mean ± standard deviation. Results Out of 49 patients with omphaloceles, 12 were treated with GRAVITAS, 33 underwent primary closure, and 4 were treated using Schuster's technique. Mean time to secondary closure after GRAVITAS was 7 ± 10 days. In nine of the patients who had isolated omphalocele, secondary closure was achieved after 4 ± 2 days. Ventilation time was 5 ± 2 days, and time to full feeds was 18 ± 16 days. In three patients (one with Fallot's tetralogy, one with Cantrell's pentalogy, and one with lung hypoplasia), abdominal closure was achieved after 17 ± 15 days. Due to cardiorespiratory comorbidity, ventilation time was 〉 30 days. Five patients received initial closure of the skin and secondary fascial closure after 18 ± 15 months. One patient with prior fascial closure underwent later repair of an abdominal wall hernia. During follow-up (30 ± 35 months), one patient with gastrointestinal obstruction due to adhesions required laparotomy, and one patient with gastroesophageal reflux disease underwent fundoplication. Conclusion GRAVITAS is a feasible method for staged closure of large omphaloceles when successful primary closure is deemed questionable.
    Type of Medium: Online Resource
    ISSN: 0939-7248 , 1439-359X
    URL: Article
    DOI: 10.1055/s-0039-1693727
    Language: English
    Publisher: Georg Thieme Verlag KG
    Publication Date: 2020
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  • 2
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    Parent–child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia: a Swedish–German cross-sectional study
    Springer Science and Business Media LLC ; 2021
    In:  Orphanet Journal of Rare Diseases Vol. 16, No. 1 ( 2021-03-06)
    Details
    In: Orphanet Journal of Rare Diseases, Springer Science and Business Media LLC, Vol. 16, No. 1 ( 2021-03-06)
    Abstract: The aim was to compare parent and child-reported health-related quality of life (HRQOL) of children born with esophageal atresia (EA) and 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 4.0™ questionnaire and the condition-specific EA QOL questionnaire were used to assess children’s HRQOL from parents' and children’s perspectives. The PedsQL™ 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. When a 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 binary logistic regression analyzes showed that the child’s age, gender, and country (Germany vs. Sweden) were significant predictors of parent–child agreement in condition-specific HRQOL. We did not identify any significant variables that explain agreement for the generic HRQOL. Conclusion The parent–child agreement is mostly good, suggesting that parent-reports are a reliable source of information. However, discrepancies may occur and can be explained by the child's age, gender, and country (Sweden vs. Germany). Both perspectives are essential sources for treating EA patients and should not be considered right or wrong. Instead, this information broadens the perspective on pediatric EA patients.
    Type of Medium: Online Resource
    ISSN: 1750-1172
    URL: Article
    DOI: 10.1186/s13023-021-01748-x
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2225857-7
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  • 3
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    Thoracoscopic Procedures in Pediatric Surgery: What is the Evidence?
    Georg Thieme Verlag KG ; 2013
    In:  European Journal of Pediatric Surgery Vol. 24, No. 01 ( 2013-7-12), p. 014-019
    Details
    In: European Journal of Pediatric Surgery, Georg Thieme Verlag KG, Vol. 24, No. 01 ( 2013-7-12), p. 014-019
    Type of Medium: Online Resource
    ISSN: 0939-7248 , 1439-359X
    URL: Issue
    URL: Journal
    URL: Article
    DOI: 10.1055/s-004-26337
    DOI: 10.1055/s-00000015
    DOI: 10.1055/s-0033-1350060
    Language: English
    Publisher: Georg Thieme Verlag KG
    Publication Date: 2013
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  • 4
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    Quality of Life in Parents of Children Born with Esophageal Atresia
    Georg Thieme Verlag KG ; 2019
    In:  European Journal of Pediatric Surgery Vol. 29, No. 04 ( 2019-08), p. 371-377
    Details
    In: European Journal of Pediatric Surgery, Georg Thieme Verlag KG, Vol. 29, No. 04 ( 2019-08), p. 371-377
    Abstract: 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.
    Type of Medium: Online Resource
    ISSN: 0939-7248 , 1439-359X
    URL: Article
    DOI: 10.1055/s-0038-1660867
    Language: English
    Publisher: Georg Thieme Verlag KG
    Publication Date: 2019
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  • 5
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    Generic Health-Related Quality of Life after Repair of Esophageal Atresia and Its Determinants within a German–Swedish Cohort
    Georg Thieme Verlag KG ; 2019
    In:  European Journal of Pediatric Surgery Vol. 29, No. 01 ( 2019-02), p. 075-084
    Details
    In: European Journal of Pediatric Surgery, Georg Thieme Verlag KG, Vol. 29, No. 01 ( 2019-02), p. 075-084
    Abstract: 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.
    Type of Medium: Online Resource
    ISSN: 0939-7248 , 1439-359X
    URL: Article
    DOI: 10.1055/s-0038-1672144
    Language: English
    Publisher: Georg Thieme Verlag KG
    Publication Date: 2019
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  • 6
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    The Esophageal-Atresia-Quality-of-life Questionnaires: Feasibility, Validity and Reliability in Sweden and Germany
    Ovid Technologies (Wolters Kluwer Health) ; 2018
    In:  Journal of Pediatric Gastroenterology & Nutrition Vol. 67, No. 4 ( 2018-10), p. 469-477
    Details
    In: Journal of Pediatric Gastroenterology & Nutrition, Ovid Technologies (Wolters Kluwer Health), Vol. 67, No. 4 ( 2018-10), p. 469-477
    Abstract: Esophageal atresia (EA) is a rare malformation characterized of discontinuity of the esophagus, concurrent with or without a tracheoesophageal fistula (TEF). We report the feasibility validity and reliability of a condition-specific quality-of-life (QOL) tool for EA/TEF children, the age-adapted EA-QOL-questionnaires, when used in Sweden and Germany. Methods: A total of 124 families of children with EA/TEF participated in the study; 53 parents completed the EA-QOL-questionnaire for children aged 2 to 7 years; 62 children/71 parents the EA-QOL-questionnaire for children 8 to 17 years. Feasibility was determined from the percentage of missing item responses. Based on clinical data and previously validated generic QOL-instruments (PedsQL 4.0, DISABKIDS-12), the final EA-QOL scores were evaluated against hypotheses of validity (known-groups/concurrent/convergent) and reliability (internal consistency/retest reliability of scores for 3 weeks). Significant level was P 〈 0.05. Results: In the questionnaire for EA/TEF children aged 2 to 7 years, 16/18 items were completed with missing values 〈 6% (range 0%–7.5%), and in the questionnaire for 8 to 17-year-olds, 24/24 child-reported items (range 0%–4.8%) and 21/24 parent-reported items (range 0%–7.0%). In both age-specific EA-QOL-questionnaires, desirable standards for known-groups and concurrent validity were fulfilled; digestive symptoms and feeding difficulties negatively impacted EA-QOL-Total-scores ( P 〈 0.001), and as hypothesized, in 2 to 7-year-olds, respiratory symptoms decreased EA-QOL-Total-scores ( P  = 0.002). Correlations between the EA-QOL and generic QOL questionnaires supported convergent validity. Internal consistency reliability was satisfactory. The level of agreements of EA-QOL-scores between the field- and retest study were good to excellent. Conclusions: 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.
    Type of Medium: Online Resource
    ISSN: 0277-2116 , 1536-4801
    URL: Article
    DOI: 10.1097/MPG.0000000000002019
    Language: English
    Publisher: Ovid Technologies (Wolters Kluwer Health)
    Publication Date: 2018
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  • 7
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    Health‐related quality of life experiences in children and adolescents born with esophageal atresia: A Swedish–German focus group study
    Wiley ; 2019
    In:  Child: Care, Health and Development Vol. 45, No. 1 ( 2019-01), p. 79-88
    Details
    In: Child: Care, Health and Development, Wiley, Vol. 45, No. 1 ( 2019-01), p. 79-88
    Abstract: Esophageal atresia (EA) is a rare malformation of the esophagus, which needs surgical treatment. Survival rates have reached 95%, but esophageal and respiratory morbidity during childhood is frequent. Child and parent perspectives and cultural and age‐specific approaches are fundamental in understanding children's health‐related quality of life (HRQoL) and when developing a pediatric HRQoL questionnaire. We aimed to increase the conceptual and cross‐cultural understanding of condition‐specific HRQoL experiences among EA children from Sweden and Germany and investigate content validity for an EA‐specific HRQoL questionnaire. Methods Eighteen standardized focus groups (FGs) with 51 families of EA children aged 2–17 years in Sweden ( n  = 30 families) and Germany ( n  = 21 families) were used to explore HRQoL experiences, which were content analyzed into HRQoL domains. The Swedish HRQoL domains were analyzed first and used as framework to evaluate HRQoL content reported in the German FGs. HRQoL experiences were then categorized as physical, social, and emotional HRQoL burden or resource. Results One thousand nine hundred eight HRQoL statements were recorded. All nine EA‐specific HRQoL domains identified in the Swedish FGs (eating, social relationships, general life issues, communication, body issues, bothersome symptoms, confidence, impact of medical treatment, and additional difficulties due to concomitant anomalies) were recognized in the FGs held in Germany, and no additional EA‐specific HRQoL domain was found. The HRQoL dimensions referenced physical burden ( n  = 655, 34.5%), social burden ( n  = 497, 26.0%), social resources ( n  = 303, 15.9%), emotional burden ( n  = 210, 11.0%), physical resources ( n  = 158, 8.3%), and emotional resources ( n  = 85, 4.5%). Conclusion This first international FG study to obtain the EA child and his or her parents' perspective on HRQoL suggests Swedish‐German qualitative comparability of the HRQoL domains and content validity for a cross‐cultural EA‐specific HRQoL questionnaire. EA children make positive and negative HRQoL experiences, but prominently related to physical and social burden, which underlines appropriate follow‐up care and future research.
    Type of Medium: Online Resource
    ISSN: 0305-1862 , 1365-2214
    URL: Issue
    URL: Article
    DOI: 10.1111/cch.v45.1
    DOI: 10.1111/cch.12619
    Language: English
    Publisher: Wiley
    Publication Date: 2019
    detail.hit.zdb_id: 2018207-7
    SSG: 5,2
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  • 8
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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
    Georg Thieme Verlag KG ; 2020
    In:  European Journal of Pediatric Surgery Vol. 30, No. 01 ( 2020-02), p. 096-103
    Details
    In: European Journal of Pediatric Surgery, Georg Thieme Verlag KG, Vol. 30, No. 01 ( 2020-02), p. 096-103
    Abstract: 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.
    Type of Medium: Online Resource
    ISSN: 0939-7248 , 1439-359X
    URL: Article
    DOI: 10.1055/s-0039-1693729
    Language: English
    Publisher: Georg Thieme Verlag KG
    Publication Date: 2020
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  • 9
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    Factors of family impact in a Swedish–German cohort of children born with esophageal atresia
    Springer Science and Business Media LLC ; 2022
    In:  Orphanet Journal of Rare Diseases Vol. 17, No. 1 ( 2022-12)
    Details
    In: Orphanet Journal of Rare Diseases, Springer Science and Business Media LLC, Vol. 17, No. 1 ( 2022-12)
    Abstract: After repair of esophageal atresia (EA), childhood survivors commonly present with digestive and respiratory morbidity, and around 55% have associated anomalies. Although it is known that these problems can reduce health-related quality of life in children with EA, less is understood about the impact on the family. We aimed to identify factors related to family impact in children with EA. Methods One parent each of a child with EA (2–18 years) in 180 families from Sweden and Germany answered the PedsQL™ Family Impact Module as the dependent variable. The independent variables were the child’s parent-reported health-related quality of life as measured by PedsQL™ 4.0, current symptoms, school situation, and parent/family characteristics together with child clinical data from the medical records. Results Stepwise multivariable regression analysis showed a multifactorial model of the total family impact scores ( R 2  = 0.60), with independent factors being the child’s overall generic health-related quality of life, school-absence ≥ 1/month, severe tracheomalacia, a family receiving carer’s allowance, and a parent with no university/college education, p   〈  0.05. Logistic regression analysis showed that an increased number of symptoms in the child the preceding 4 weeks lowered the family impact scores; however, the child’s feeding ( R 2  = 0.35) and digestive symptoms ( R 2  = 0.25) explained more in the variation of scores than the child’s respiratory symptoms ( R 2  = 0.09), p   〈  0.0001. Conclusions Family functioning may be a contributing factor to the maintenance of child health. The study findings suggest multifactorial explanations to family impact in children with EA, which are essential when optimizing the support to these families in clinical and psychosocial practice. Future research should explore experiences of family impact from all family members’ perspectives and multicenter studies are warranted to understand better the effectiveness of psychosocial-educational interventions to families of children with EA.
    Type of Medium: Online Resource
    ISSN: 1750-1172
    URL: Article
    DOI: 10.1186/s13023-022-02361-2
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
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  • 10
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    Computed tomography donor liver volumetry before liver transplantation in infants ≤10 kg: does the estimated graft diameter affect the outcome?
    Walter de Gruyter GmbH ; 2018
    In:  Innovative Surgical Sciences Vol. 3, No. 4 ( 2018-07-03), p. 253-259
    Details
    In: Innovative Surgical Sciences, Walter de Gruyter GmbH, Vol. 3, No. 4 ( 2018-07-03), p. 253-259
    Abstract: Living donor liver transplantation (LDLT) is regularly performed in small-sized infants. Computed tomography (CT)-based donor liver volumetry is used to estimate the graft size. The aim of our study was to assess the results of CT liver volumetry and their impact on the clinical outcome after LDLT in extremely small-sized infants. Patients and methods In this study, we included all patients with a body weight of ≤10 kg who underwent living related liver transplantation at our centre between January 2004 and December 2014. In all cases of LDLT, a preoperative CT scan of the donor liver was performed, and the total liver and graft volumes were calculated. The graft shape was estimated by measuring the ventro-dorsal (thickness), cranio-caudal, and transversal (width) diameter of segment II/III. We assessed the impact of CT donor liver volumetry and other risk factors on the outcome, defined as patient and graft survival. Results In the study period, a total of 48 living related liver transplantations were performed at our centre in infants ≤10 kg [20 male (42%), 28 female (58%)]. The mean weight was 7.3 kg (range 4.4–10 kg). Among the recipients, 33 (69%) received primary abdominal closure and 15 (31%) had temporary abdominal closure. The patient and graft survival rates were 85% and 81%, respectively. In CT volumetry, the mean estimated graft volume was 255 mL (range 140–485 mL) and the actual measured mean graft weight was 307 g (range 127–463 g). The mean ventro-dorsal diameter of segment II/III was 6.9 cm (range 4.3–11.2 cm), the mean cranio-caudal diameter was 9 cm (range 5–14 cm), and the mean width was 10.5 cm (range 6–14.7 cm). The mean graft-body weight ratio (GBWR) was 4.38% (range 1.41–8.04%). A high graft weight, a GBWR 〉 4%, and a large ventro-dorsal diameter of segment II/III were risk factors for poorer patient survival. Conclusion Preoperative assessment of the graft size is a crucial investigation before LDLT. For extremely small-sized recipients, not only the graft weight but also the graft shape seems to affect the outcome.
    Type of Medium: Online Resource
    ISSN: 2364-7485
    URL: Article
    DOI: 10.1515/iss-2017-0047
    Language: Unknown
    Publisher: Walter de Gruyter GmbH
    Publication Date: 2018
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