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

Overview

Journal Int J Environ Res Public Health

Publisher MDPI

Specialties Environmental Health
Public Health

Date 2022 Nov 26

PMID 36429641

Authors

Siqi Li

Michaela Dellenmark-Blom

Yong Zhao

Yichao Gu

Shuangshuang Li

Shen Yang

Julia H Quitmann

Jinshi Huang

Affiliations

Soon will be listed here.

Abstract

Background: After repair of esophageal atresia (EA), children risk digestive and respiratory morbidity, but knowledge of their health-related quality of life (HRQOL) in China is lacking. The EA-QOL questionnaires were developed in Sweden and Germany to evaluate condition-specific HRQOL in children with EA aged 2-7 and 8-17. This study aimed to evaluate the linguistic and content validity of the Chinese Mandarin version of the EA-QOL questionnaires.

Methods: The procedure was conducted in compliance with international standards, including a forward-backward translation procedure, expert reviews, and cognitive debriefing interviews with 14 Chinese families of children with EA (parents of 8 children aged 2-7/6 children aged 8-17 and their parents).

Results: Following forward-backward translation, minor issues were identified and solved. In interviews, all participants rated all EA-QOL items easy to understand, none expressed negative emotions about them and most described them comprehensive and relevant for EA. Leading from cognitive debriefing, three EA-QOL items in the questionnaire version for children aged 2-7 and three EA-QOL items in the questionnaire version for children aged 8-17 were modified in the Chinese language to improve cultural appropriateness and/or clarity.

Conclusion: The Chinese Mandarin version of the EA-QOL questionnaires achieved satisfactory linguistic and content validity. This can help increase focus of HRQOL in research and clinical practice of children with EA in China.

Citing Articles

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References

van Lennep M, Singendonk M, DallOglio L, Gottrand F, Krishnan U, Terheggen-Lagro S . Oesophageal atresia. Nat Rev Dis Primers. 2019; 5(1):26. DOI: 10.1038/s41572-019-0077-0. View

Witt S, Blomeke J, Bullinger M, Dingemann J, Quitmann J . Basic Principles of Health-Related Quality of Life in Parents and Caregivers of Pediatric Surgical Patients with Rare Congenital Malformations-A Scoping Review. Eur J Pediatr Surg. 2020; 30(3):225-231. DOI: 10.1055/s-0040-1710029. View

Ten Kate C, IJsselstijn H, Dellenmark-Blom M, van Tuyll van Serooskerken E, Joosten M, Wijnen R . Psychometric Performance of a Condition-Specific Quality-of-Life Instrument for Dutch Children Born with Esophageal Atresia. Children (Basel). 2022; 9(10). PMC: 9600375. DOI: 10.3390/children9101508. View

Patrick D, Burke L, Gwaltney C, Leidy N, Martin M, Molsen E . Content validity--establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1--eliciting concepts for a new PRO.... Value Health. 2011; 14(8):967-77. DOI: 10.1016/j.jval.2011.06.014. View

DeMuro C, Lewis S, DiBenedetti D, Price M, Fehnel S . Successful implementation of cognitive interviews in special populations. Expert Rev Pharmacoecon Outcomes Res. 2012; 12(2):181-7. DOI: 10.1586/erp.11.103. View

Rajmil L, Perestelo-Perez L, Herdman M . Quality of life and rare diseases. Adv Exp Med Biol. 2010; 686:251-72. DOI: 10.1007/978-90-481-9485-8_15. View

Rozensztrauch A, Smigiel R, Patkowski D, Gerus S, Klaniewska M, Quitmann J . Reliability and Validity of the Polish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia. Int J Environ Res Public Health. 2022; 19(13). PMC: 9265357. DOI: 10.3390/ijerph19138047. View

Price V, Klaassen R, Bolton-Maggs P, Grainger J, Curtis C, Wakefield C . Measuring disease-specific quality of life in rare populations: a practical approach to cross-cultural translation. Health Qual Life Outcomes. 2009; 7:92. PMC: 2773763. DOI: 10.1186/1477-7525-7-92. View

Dai W, Wang Y, Liu Y, Wei X, Osman A, Pompili C . Translation and adaptation of the EORTC QLQ-LC 29 for use in Chinese patients with lung cancer. J Patient Rep Outcomes. 2021; 5(1):122. PMC: 8581083. DOI: 10.1186/s41687-021-00397-9. View

10.

Chang Y, Luo Y, Zhou Y, Wang R, Song N, Zhu G . Reliability and validity of the Chinese mandarin version of PedsQL™ 3.0 transplant module. Health Qual Life Outcomes. 2016; 14(1):142. PMC: 5053074. DOI: 10.1186/s12955-016-0545-0. View

11.

Matza L, Patrick D, Riley A, Alexander J, Rajmil L, Pleil A . Pediatric patient-reported outcome instruments for research to support medical product labeling: report of the ISPOR PRO good research practices for the assessment of children and adolescents task force. Value Health. 2013; 16(4):461-79. DOI: 10.1016/j.jval.2013.04.004. View

12.

Slade A, Isa F, Kyte D, Pankhurst T, Kerecuk L, Ferguson J . Patient reported outcome measures in rare diseases: a narrative review. Orphanet J Rare Dis. 2018; 13(1):61. PMC: 5914068. DOI: 10.1186/s13023-018-0810-x. View

13.

Tan Tanny S, Comella A, Hutson J, Omari T, Teague W, King S . Quality of life assessment in esophageal atresia patients: a systematic review focusing on long-gap esophageal atresia. J Pediatr Surg. 2019; 54(12):2473-2478. DOI: 10.1016/j.jpedsurg.2019.08.040. View

14.

Lepeytre C, de Lagausie P, Merrot T, Baumstarck K, Oudyi M, Dubus J . [Medium-term outcome, follow-up, and quality of life in children treated for type III esophageal atresia]. Arch Pediatr. 2013; 20(10):1096-104. DOI: 10.1016/j.arcped.2013.06.035. View

15.

Eiser C, Varni J . Health-related quality of life and symptom reporting: similarities and differences between children and their parents. Eur J Pediatr. 2013; 172(10):1299-304. DOI: 10.1007/s00431-013-2049-9. View

16.

Haverman L, Limperg P, Young N, Grootenhuis M, Klaassen R . Paediatric health-related quality of life: what is it and why should we measure it?. Arch Dis Child. 2016; 102(5):393-400. DOI: 10.1136/archdischild-2015-310068. View

17.

Engelen V, Detmar S, Koopman H, Maurice-Stam H, Caron H, Hoogerbrugge P . Reporting health-related quality of life scores to physicians during routine follow-up visits of pediatric oncology patients: is it effective?. Pediatr Blood Cancer. 2011; 58(5):766-74. DOI: 10.1002/pbc.23158. View

18.

Chen X, Zhou X, Li H, Li J, Jiang H . The value of WeChat application in chronic diseases management in China. Comput Methods Programs Biomed. 2020; 196:105710. DOI: 10.1016/j.cmpb.2020.105710. View

19.

Sulkowski J, Cooper J, Lopez J, Jadcherla Y, Cuenot A, Mattei P . Morbidity and mortality in patients with esophageal atresia. Surgery. 2014; 156(2):483-91. PMC: 4099299. DOI: 10.1016/j.surg.2014.03.016. View

20.

Yang S, Liao J, Li S, Hua K, Wang P, Zhang Y . Risk Factors and Reasons for Treatment Abandonment for Patients With Esophageal Atresia: A Study From a Tertiary Care Hospital in Beijing, China. Front Pediatr. 2021; 9:634573. PMC: 8112547. DOI: 10.3389/fped.2021.634573. View