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

Abstract

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.

Linguistic, Content and Face Validity of the Swedish Version of a Quality-of-Life Assessment for Children, Teenagers and Adults with Spina Bifida

“…Moreover, we asked the study participants if any question in QUALAS was sensitive/uncomfortable to answer. One reason for asking this question is that the perception of a question being sensitive/uncomfortable to answer could interfere with the openness of the reply and/or the wording used in the new translation could be emotive [38,47]. In our study, we found that none of the children found any question sensitive/uncomfortable to answer.…”

“…However, looking at the previous literature on children with congenital malformations, when measuring condition-specific patient-reported outcomes in patients with cleft lip and/or palate, a subgroup of 23% reported feeling upset or unhappy about their appearance or how they looked after completing CLEFT-Q [51]. In another study based on a condition-specific questionnaire for children born with esophageal atresia (EA) [47,52], items were generally not perceived as sensitive/uncomfortable to answer, but in certain countries questions about a child's social exclusion due to EA were perceived as sensitive/uncomfortable to answer. And across 14 countries, the most sensitive/uncomfortable question, rated as such by 9.9% of the children, was the one asking if they experienced sadness due to their condition [47].…”

“…In another study based on a condition-specific questionnaire for children born with esophageal atresia (EA) [47,52], items were generally not perceived as sensitive/uncomfortable to answer, but in certain countries questions about a child's social exclusion due to EA were perceived as sensitive/uncomfortable to answer. And across 14 countries, the most sensitive/uncomfortable question, rated as such by 9.9% of the children, was the one asking if they experienced sadness due to their condition [47].…”