The Chinese Mandarin Version of the Esophageal-Atresia-Quality-of-Life Questionnaires for Children and Adolescents: Evaluation of Linguistic and Content Validity

Li, Siqi; Dellenmark‐Blom, Michaela; Zhao, Yingxin; Gu, Yun; Li, Shuangshuang; Shen, Yang; Quitmann, Julia; Huang, Jinshi

doi:10.3390/ijerph192214923

Cited by 8 publications

(14 citation statements)

References 40 publications

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“…Parents in China wished for clarification of the idea that food gets stuck in the esophagus, not the throat (item 1). Parents in three countries (China, the UK and Hungary), also asked about the definition of “choke” (item 5–6), to ensure it referred to “cough caused by inhalation of food into the trachea while eating” [ 45 ]. The parents from the UK described the fact that two original items needed clarification as to whether the child was bothered by the symptom or only if the symptom was present in the child (items 1 and 8), and asked if vomiting (item 8) included regurgitation;…”

Section: Resultsmentioning

confidence: 99%

“…Children aged 8–18 who were born with EA and one of their parents were invited to the cognitive debriefing interview. The goal was to recruit a small sample with varying severity of EA, as described in detail previously [ 40 , 41 , 45 ], and in agreement with the initial cognitive debriefing conducted in Sweden and Germany [ 33 ], as well as recommendations from the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) [ 31 , 37 ]. Table 1 shows the characteristics of 82 children born with EA and 86 parents in 12 new countries who participated; 4–10 children and 5–10 parents participated in each country.…”

Section: Methodsmentioning

confidence: 99%

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An International Collaborative Initiative to Establish a Quality-of-Life Questionnaire for Children and Adolescents with Repair of Esophageal Atresia in 14 Countries

2024

Children

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The EA-QOL questionnaire measures quality-of-life specifically for children born with esophageal atresia (EA) aged 8–18 and was completed in Sweden and Germany. This study aimed to describe an international collaborative initiative to establish a semantically equivalent linguistic version of the EA-QOL questionnaires in 12 new countries. The 24-item EA-QOL questionnaire was translated into the target languages and the translated questionnaire was evaluated through cognitive debriefing interviews with children with EA aged 8–18 and their parents in each new country. Participants rated an item as to whether an item was easy to understand and sensitive/uncomfortable to answer. They could choose not to reply to a non-applicable/problematic item and provide open comments. Data were analyzed using predefined psychometric criteria; item clarity ≥80%, item sensitive/uncomfortable to answer ≤20%, item feasibility(missing item responses ≤5%). Decision to improve any translation was made by native experts–patient stakeholders and the instrument developer. Like in Sweden and Germany, all items in the cross-cultural analysis of child self-report (ntot = 82, 4–10 children/country) met the criteria for item clarity in all 12 new countries, and in parent-report (ntot = 86, 5–10 parents/country) in 8/12 countries. All items fulfilled the criteria for sensitive/uncomfortable to answer (child-report 1.2–9.9%; parent-report 0–11.6%) and item feasibility. Poor translations were resolved. Hence, this study has established semantically equivalent linguistic versions of the EA-QOL questionnaire for use in children aged 8–18 with repair of EA in and across 14 countries.

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Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

An International Collaborative Initiative to Establish a Quality-of-Life Questionnaire for Children and Adolescents with Repair of Esophageal Atresia in 14 Countries

2024

Children

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“…Out of 345 articles identified by the database searches, 49 articles met the inclusion criteria. 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 75 76 Most concerned esophageal atresia ( n = 17) and Hirschsprung's disease ( n = 14). None of the articles focused on duodenal atresia or omphalocele.…”

Section: Resultsmentioning

confidence: 99%

A Narrative Review of Patient-Reported Outcome Measures and Their Application in Recent Pediatric Surgical Research: Advancing Knowledge and Offering New Perspectives to the Field

Spivack,

Dellenmark-Blom,

Dingemann

et al. 2024

Eur J Pediatr Surg

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Introduction Patient-reported outcome measures (PROMs) can be employed in both research and clinical care to enhance our understanding of outcomes that matter to patients. This narrative review aims to describe PROM use in recent pediatric surgical research, identify and describe psychometrically robust PROMs, providing an overview of those derived from pediatric patient input, and make recommendations for future research. Materials and Methods A search was conducted to identify articles published from 2021 to August 2023 describing the availability and/or use of at least one valid or reliable PROM in children with conditions including anorectal malformations, biliary atresia, congenital diaphragmatic hernia, duodenal atresia, esophageal atresia, abdominal wall defects, Hirschsprung's disease, sacrococcygeal teratoma, and short bowel syndrome. Articles were categorized based on their objectives in applying PROMs. Psychometrically robust PROMs were identified and described. Results Out of the 345 articles identified, 49 met the inclusion criteria. Seventeen focused on esophageal atresia and 14 on Hirschsprung's disease. Twenty-nine PROMs were identified, with 12 deemed psychometrically robust. Seven psychometrically robust PROMs were developed using patient input in the primary item generation. Most PROMs were applied to advance understanding of conditions and/or treatment and fewer were developed or psychometrically evaluated. No PROMs were assessed for their impact or incorporated into an implementation study. Conclusions This review reveals gaps in the application of PROMs in recent pediatric surgical research. Emphasis should be placed on the development and utilization of psychometrically robust PROMs, broadening the scope of covered diseases, conducting impact assessments, and evaluating implementation strategies.

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“…The disease-speci c EA-QOL questionnaire was originally developed by Dellenmark-Blom et al according to a standard procedure and repeated study con rmed cross-cultural equivalence in Swedish-German study [13]. Subsequently, EA questionnaire also has a standardized Chinese version [14]. EA-QOLquestionnaire have two versions for 2-7-year-old children and 8-17-year-old children.…”

Section: Ea-qol-questionnairementioning

confidence: 99%

Health-Related Quality of Life in Children after Surgical Repair of Esophageal Atresia: A Single Tertiary Center Cross-sectional Study

Feng,

Zhu,

Peng

et al. 2023

Preprint

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Objective To investigate health-related quality of life (HRQOL) of in postoperative esophageal atresia (EA) patients and to identify its potential influencing factors. Methods A total of 102 EA children who had previously visited our hospital participated in this cross-sectional study. Basic data and disease data of the patients were collected. The HRQOL was assessed by Pediatric Quality of Life InventoryTM4.0 (PedsQLTM4.0) and EA-QOL questionnaire. The scores of PedsQLTM4.0 were calculated and compared with demographically matched healthy control group. The HRQOL of EA was analyzed by the specific scale EA-QOL-questionnaire. We calculated the overall score and each domain scores, and determined related factors that influenced the HRQOL in children with EA by using a multivariate analysis of variance Results The group of EA and control reached a similar score in the generic PedsQLTM4.0 (EA group: 89.41 ± 6.54; control: 89.41 ± 6.54; p = 0.670). There was no significant difference between the EA group and the control group in other domains except the school functioning. 65 parents completed the EA-QOL-questionnaire for children aged 2 to 7 years, who had highest score in social isolation & stress domain and lowest score in physical health & treatment domain, and other domain in the middle, with an overall quality of life score of 83.48 ± 10.22; 37 children the EA-QOL-questionnaire for children 8 to 17 years. Scores were relatively high in social relationships and health & well-being and lowest in eating domain, with an overall quality of life score of 89.43 ± 8.57. Heart malformation, complicated esophageal surgery history, respiratory symptoms and digestive symptoms in the past 1 month were the main factors affecting HRQOL of children aged 2–7 years. Complicated esophageal surgery history, respiratory symptoms and digestive symptoms in the past 1 month were the main factors affecting the HRQOL of children aged 8–17 years. Conclusions This study provides the first evaluation of HRQOL in the Chinses EA patients. The findings presented here suggest that patients with EA generally have a good quality of life after surgery. However, EA children with postoperative complications and associated symptoms have lower scores in the EA-QOL questionnaire. In the future, we should pay more attention to the application of specific scales and conduct timely intervention for those patients with low quality of life.

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The Chinese Mandarin Version of the Esophageal-Atresia-Quality-of-Life Questionnaires for Children and Adolescents: Evaluation of Linguistic and Content Validity

Cited by 8 publications

References 40 publications

An International Collaborative Initiative to Establish a Quality-of-Life Questionnaire for Children and Adolescents with Repair of Esophageal Atresia in 14 Countries

An International Collaborative Initiative to Establish a Quality-of-Life Questionnaire for Children and Adolescents with Repair of Esophageal Atresia in 14 Countries

A Narrative Review of Patient-Reported Outcome Measures and Their Application in Recent Pediatric Surgical Research: Advancing Knowledge and Offering New Perspectives to the Field

Health-Related Quality of Life in Children after Surgical Repair of Esophageal Atresia: A Single Tertiary Center Cross-sectional Study

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