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

Dellenmark‐Blom, Michaela; Quitmann, Julia; Dingemann, Jens; Witt, Stefanie; Ure, Benno M.; Bullinger, Monika; Jönsson, Linus; Gatzinsky, Vladimir; Dingemann, Carmen

doi:10.1055/s-0039-1693729

Cited by 28 publications

(44 citation statements)

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“…described HRQoL among children and adolescents born with EA, [24][25][26][27][28][29][30][31][32][33][34][35][36][37][38] three of which 32,34,38 also reported on HRQoL among adults (patients >18 years old). The remaining two articles described HRQoL among adults with EA only.…”

Section: Current Literature Regarding Hrqol In Patients Following Ea mentioning

confidence: 99%

“…25,28,34 Moreover, six articles (41%) reported on HRQoL in international samples, in five of which HRQoL in Swedish-German pediatric EA cohorts was described. 26,[29][30][31]36 The remaining international study included the largest number of respondents, through collaboration with patient organizations. 38 Among 15 quantitative studies, sample sizes varied between 17 and 928 (median 46).…”

Section: Current Literature Regarding Hrqol In Patients Following Ea mentioning

confidence: 99%

“…However, between the ages of 8 and 17, results were significant only for breathlessness and chest tightness. 30 Using the EA-QOL questionnaires, Dellenmark-Blom et al demonstrated 36 that in children with EA aged from 2 to 7, no primary anastomosis and being female predicted lower HRQoL scores for "physical health and treatment," while gastrostomy insertion predicted lower scores for "eating" and "social isolation and stress." Between the ages of 8 and 17, not having had primary anastomosis, being premature, and having had esophageal dilatation (parent report) predicted poor HRQoL related to "eating."…”

Section: Factors Associated With Impaired Condition-specific Hrqolmentioning

confidence: 99%

“…Respiratory symptoms explained generally less in the variation in scores than digestive symptoms. 36 In addition to clinical factors, the relationship between the condition-specific HRQoL domain "eating" and the ability to cope has been described in one study that included Swedish children and adolescents born with EA. 35 The majority of patients aged between 2 and 17 (86%) was reported as managing challenging nutritional intake situations by accepting them.…”

Section: Factors Associated With Impaired Condition-specific Hrqolmentioning

confidence: 99%

“…Eight studies of pediatric patients recruited families from the same Swedish and/or German center cohorts. 24,26,[29][30][31][35][36][37] Factors that are investigated as having an influence on HRQoL in patients with EA vary by definition, and there is an emphasis on clinical variables. As stated by Tan Tanny et al, 53 specific HRQoL assessments in patients with LGEA are needed.…”

Section: Strengths and Limitations In Hrqol Assessment Of Patients Afmentioning

confidence: 99%

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

2020

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Patients born with esophageal atresia (EA) require advanced reconstructive surgery and risk long-term digestive and respiratory morbidity. We describe the state of current literature on these patients' health-related quality of life (HRQoL) and give recommendations for future research. A literature search was conducted in PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsychINFO and included articles from 2015 to December 28, 2019. Criteria for selecting articles were predefined. Seventeen articles describing HRQoL among children, adolescents, and adults were found, two of which focused on adults only. Six studies included international samples and among 15 quantitative studies sample sizes varied from 17 to 928 (median: 46). Seven different HRQoL questionnaires were used for children, three of which were specially adjusted for EA, of which one was reported validity and reliability. Four questionnaires were used for adults, one of which was generic and three symptom-specific, referring to swallowing or to the gastrointestinal tract. Hence, HRQoL outcomes were described differently. However, several studies of pediatric patients with EA revealed associations between lower HRQoL and particular congenital and surgical characteristics, which reflected disease severity. In two out of three articles, pediatric patients with EA had lower overall scores than healthy children. Digestive symptoms consistently lowered HRQoL scores in children and adults. Prior to 2015, only 12 studies were published, which illustrate a recent expansion in this field. Various HRQoL aspects and heterogeneous samples are examined, and outcomes differently reported. Current literature suggests that clinical subgroups of children with EA present with impaired HRQoL and that digestive symptomology influence HRQoL negatively. Conclusions of studies focusing on adults with EA are difficult to draw. Additional research is required.

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Section: Current Literature Regarding Hrqol In Patients Following Ea mentioning

confidence: 99%

Section: Current Literature Regarding Hrqol In Patients Following Ea mentioning

confidence: 99%

Section: Factors Associated With Impaired Condition-specific Hrqolmentioning

confidence: 99%

Section: Factors Associated With Impaired Condition-specific Hrqolmentioning

confidence: 99%

Section: Strengths and Limitations In Hrqol Assessment Of Patients Afmentioning

confidence: 99%

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

2020

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Health‐related quality of life and patient‐reported outcome measurements in patients with cystinosis

et al. 2022

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Nephropathic cystinosis is a rare autosomal recessive lysosomal storage disorder. With the availability of treatment and renal replacement therapy, nephropathic cystinosis has evolved from an early fatal disease to a chronic, progressive disorder with potentially high impairment. We aim to review the literature on the healthrelated quality of life and identify appropriate patient-reported outcome measurements to assess the health-related quality of life of patients with cystinosis. For this review, we conducted a literature search in PubMed and Web of Science in September 2021. Inclusion and exclusion criteria for the selection of articles were defined a priori. We identified 668 unique articles through the search and screened them based on title and abstract. The full texts of 27 articles were assessed. Finally, we included five articles (published between 2009 and 2020) describing the health-related quality of life in patients with cystinosis. All studies, apart from one, were conducted in the United States, and no condition-specific measurement was used. Patients with cystinosis reported a lower health-related quality of life (for certain dimensions) than healthy subjects. Few published studies address the health-related quality of life of patients with cystinosis. Such data must be collected standardized and follow the FAIR (Findable, Accessible, Interoperable, and Reusable) principles. To gain a comprehensive understanding of the impact of this disorder on health-related quality of life, it is necessary to use generic and condition-specific instruments to measure this, preferably in large samples from longitudinal studies. A cystinosis-specific instrument for measuring health-related quality of life has yet to be developed. K E Y W O R D Scystinosis, health-related quality of life, patient-reported outcome measurements, rare diseases, scoping review

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Gastric emptying and myoelectrical activity testing in children with esophageal atresia: A pilot study

Mussies,

Duvoisin,

et al. 2023

JPGN rep.

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ObjectivesAbnormalities of gastric function in children with esophageal atresia (EA) could potentially contribute to gastrointestinal symptoms and reduced quality of life (QOL). Therefore, we aimed to determine the feasibility and clinical usefulness of gastric function testing in children with EA.MethodsThe validated PedsQL Gastrointestinal Symptoms Questionnaire (PedsQL‐GI) was completed to assess gastrointestinal symptoms and symptom‐related QOL. Gastric emptying and gastric myoelectrical activity were studied using 13C‐gastric emptying octanoic acid breath test (13C‐GEBT) and surface electrogastrography (EGG). Correlations between 13C‐GEBT and EGG parameters and PedsQL‐GI scores were investigated.ResultsFifteen patients (four males) were included (median age: 6 [3.0–8.5] years). Mean PedsQL‐GI scores as reported by the children were comparable to the healthy population. However, parents reported a diminished QOL. Gastric function tests (gastric emptying and/or surface EGG) showed abnormalities in 12 patients (80%). Patients with abnormal slow waves showed abnormal gastric emptying coefficient more often. There was no significant association between 13C‐GEBT nor EGG results and PedsQL‐GI scores.Conclusions13C‐GEBT and EGG can be used to evaluate gastric function in patients with EA. Abnormal gastric function tests were present in 80% of our cohort. However, abnormal gastric function did not significantly correlate with reported gastrointestinal symptom‐related QOL.

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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

Cited by 28 publications

References 40 publications

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

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

Health‐related quality of life and patient‐reported outcome measurements in patients with cystinosis

Gastric emptying and myoelectrical activity testing in children with esophageal atresia: A pilot study

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