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1. Establishment of a condition-specific quality-of-life questionnaire for children born with esophageal atresia aged 2–7 across 14 countries

Author

The International EA-QOL Group, Michaela Dellenmark Blom, Stefanie Witt, Benjamin Zendejas, Ivana Sabolić, Juan Domingo Porras-Hernandez, Natalie Durkin, Simon Eaton, Kjersti Birketvedt, Alba Sánchez Galán, Katalin Eszter Müller, Anna Rozensztrauch, Tutku Soyer, Siqi Li, Anastasia Fourtaka, Corne de Vos, Graham Slater, Ana Špoljarić, John Bennett, Ragnhild Emblem, Zita Andrásdi, Robert Smigiel, Dariusz Patkowski, Çiğdem Ulukaya Durakbaşa, Marina Stilinović, Frederic Gottrand, Dora Škrljak Šoša, Tomislav Luetić, Sylwester Gerus, Shen Yang, Yong Zhao, Yichao Gu, Shuangshuang Li, Diego Rodriguez-Alvirde, Orsolya Kadenczki, Miram Pasini, Vuokko Wallace, Anke Widenmann, Feliciana Milagres Sikwete, Jinshi Huang, Leopoldo Martínez Martínez, Kate Abrahamsson, Shawn Izadi, Benno M Ure, Daniel Sidler, Julia H Quitmann, and Jens Dingemann

Subjects
esophageal atresia, quality of life, translation, validity, cognitive debriefing, rare disease, Pediatrics, RJ1-570
Abstract

BackgroundEsophageal atresia (EA) is a rare congenital anomaly characterized by a discontinuity of the esophagus. Following surgical repair, survival rates have improved dramatically the past decenniums and today exceed 90%, but the children commonly present with esophageal and respiratory morbidity. In 2018, a condition-specific quality-of-life questionnaire for children with esophageal atresia (EA) aged 2–7 in Sweden-Germany was finalized (The EA-QOL questionnaire). The study aim was to describe the evaluation of the new translations across 12 new countries in Europe, Asia, Africa, Central-and North America.MethodsFollowing forward-backward translation into the new languages, the 17-item EA-QOL questionnaire was tested in cognitive debriefing interviews with parents of children with EA aged 2–7. Parents rated if each item was easy to understand (clarity) and sensitive to answer (interference with personal integrity). They could skip responding to a non-applicable/problematic item and give open comments. Predefined psychometric criteria were used; item clarity ≥80%/item sensitive to answer ≤20%/item feasibility ≤5% missing item responses. The decision to modify the translation was based on native expert, patient stakeholder, and instrument developer review, and the need for harmonization between translations.ResultsSimilar to findings in the Swedish-German cognitive debriefing, the cross-cultural analysis of input from 116 parents from 12 new countries (4–14 parents, median 9 parents/country) showed that all items in the EA-QOL questionnaire fulfilled the criteria for item clarity ≥80% and sensitive to answer (ranging from 1%-4.5%), although results varied between countries. Four items had missing responses between 5.2% and 13.4%, three within the same domain and were in line with parents’ explanations. Poor translations and feasibility were improved.ConclusionsBased on parent input, the collaboration between native experts, patient stakeholders, and instrument developers, a linguistic version of the EA-QOL questionnaire for children aged 2–7 for use in and across 14 countries has been established. These efforts have set the conditions for a cross-cultural field test of the EA-QOL questionnaire and will open the doors for a new chapter in outcome research, registries, and clinical practice concerning children with EA. In the long-term, this will help increase knowledge of the disease's burden, promote patient-centeredness, exchange of information between nations, and strengthen evidence-based treatments for children born with EA.

Published
2023
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2. Nutritional Status in Adolescents with Esophageal Atresia

Author

Kjersti Birketvedt, Ingrid B. Helland, Ragnhild Emblem, Audun Mikkelsen, Louise L. Klingen, and Christine Henriksen

Subjects
Male, Pediatrics, medicine.medical_specialty, Adolescent, Nutritional Status, Standard score, Body Mass Index, Young Adult, Surveys and Questionnaires, Humans, Medicine, In patient, Micronutrients, Esophageal Atresia, Anthropometry, Norway, business.industry, Nutritional status, Hydrogen-Ion Concentration, Overweight, medicine.disease, Dysphagia, Diet, Cross-Sectional Studies, Atresia, Pediatrics, Perinatology and Child Health, Cohort, Gastroesophageal Reflux, Female, medicine.symptom, Deglutition Disorders, Energy Intake, business, Nutrition counseling, Follow-Up Studies
Abstract

Objectives To examine factors that may affect nutritional status in adolescents with esophageal atresia. Study design Anthropometric measurements, blood samples, pH measuring, mapping of dysphagia with a modified Easting Assessment Test questionnaire, 4-day dietary record, and a semistructured interview about eating habits and nutrition counseling were performed in a cross-sectional cohort of adolescents with esophageal atresia. Results Out of 102 eligible patients, 68 (67%) participated. The median height-for-age Z score was −0.6 (−4.6 to 1.8). Ten (15%) were classified as stunted (height-for-age Z score

Published
2020

3. Parent-reported effects of gastrostomy tube placement

Author

Tone Lise Åvitsland, Kristin Bjørnland, Ragnhild Emblem, and Kjersti Birketvedt

Subjects
Male, Parents, Pediatrics, medicine.medical_specialty, Adolescent, Vomiting, medicine.medical_treatment, Medicine (miscellaneous), Growth, Weight Gain, Feeding and Eating Disorders, Eating, Patient satisfaction, Enteral Nutrition, medicine, Humans, Parent-Child Relations, Child, Feeding and Eating Disorders of Childhood, Intubation, Gastrointestinal, Meals, Gastrostomy tube placement, Gastrostomy, Nutrition and Dietetics, business.industry, Communication, Infant, medicine.disease, Eating disorders, Parenteral nutrition, Feeding problems, Patient Satisfaction, Child, Preschool, Female, medicine.symptom, Nervous System Diseases, business, Deglutition Disorders, Weight gain, Stress, Psychological
Abstract

Background: For children with major feeding problems and their parents, meals may be unpleasant. We aimed to evaluate how insertion of a gastrostomy tube influenced parent-child communication and satisfaction during meals, as well as duration of meals, oral intake, vomiting, and growth. Materials and Methods: Children admitted for a gastrostomy tube placement were included. Age, sex, diagnosis, and preoperative nasogastric tube were registered. Weight, height, oral feeding, duration of meals, and vomiting were assessed preoperatively and 6 and 18 months postoperatively. We used a numeric rating scale to assess parent-reported parental stress, child satisfaction, parent satisfaction, and parent-child communication during meals at all 3 time points. Results: Fifty-eight children were included: 33 boys and 25 girls. Median age was 1.7 years (range, 0.5-14.7 years). Thirty-nine were neurologically impaired, and 44 had a nasogastric tube for a median of 7.5 months (range, 0.5-28 months) preoperatively. Child satisfaction (P = .001), parent satisfaction (P = .006), and parent- child communication (P = .026) during meals were significantly improved 18 months after receiving a gastrostomy tube. Vomiting was reduced in 42%, oral intake increased in 49%, and weight-for-height percentile increased in 55% of the children. Conclusions: In children with major feeding problems, a gastrostomy tube improved parent-child communication and satisfaction during meals. Furthermore, oral intake was increased, and vomiting was reduced. Growth improved in around half of the children. (Nutr Clin Pract. XXXX;xx:xx-xx)

Published
2013

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