Yıl: 2021 Cilt: 32 Sayı: 8 Sayfa Aralığı: 640 - 650 Metin Dili: İngilizce DOI: 10.5152/tjg.2021.201005 İndeks Tarihi: 18-05-2022

Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia

Öz:
(EA-QOL) questionnaires, which were originally developed in Sweden and Germany. Methods: After translation from Swedish to Turkish and cognitive debriefings, 51 families of children aged 2-7 years (parent-reported, 17 items) and 54 families of children 8-17 years (child-reported and parent-reported, 24 items) responded to the EA-QOL questionnaires and a validated generic HRQOL instrument (PedsQL4.0). The medical records of the patients and the questionnaires were used to obtain clinical data. The Turkish version of the EA-QOL questionnaires were evaluated for feasibility (<5% missing item responses), reliability (internal consistency/retest reliability for 3 weeks), and validity (known groups/concurrent/convergent). The level of significance was P < .05. Results: The feasibility of the Turkish version of the EA-QOL questionnaires was good. The internal consistency of all scales was satisfactory, as were the levels of agreement of EA-QOL scores between the field study and the retest study. Known-group validity and concurrent validity were achieved, since the EA-QOL questionnaires showed that esophageal symptoms and feeding difficulties were negatively associated with EA-QOL total scores, both in the age-specific versions (child-reported and parent- reported), and with respect to respiratory symptoms in the version for EA children 2-7 years (parent-reported). A higher number of respiratory symptoms decreased the EA-QOL total scores in both age groups (parent-reported, P < .05). Correlations between the EA-QOL total scores and PedsQL-4.0 total scores supported convergent validity. Conclusion: The Turkish version of the EA-QOL questionnaires is feasible, valid, and reliable to assess condition-specific HRQOL in EA children.
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  • 1. Ijsselstijn H, van Beelen N W, Wijnen R M. Esophageal atresia: longterm morbidities in adolescence and adulthood. Dis Esophagus. 2013;26:417-421. [CrossRef]
  • 2. Kovesi T. Long-term respiratory complications of congenital esophageal atresia with or without tracheoesophageal fistula: an update. Dis Esophagus. 2013;26:413-416. [CrossRef]
  • 3. Haverman L, Limperg PF, Young NL, Grootenhuis MA, Klaassen RJ. Paediatric health-related quality of life: what is it and why should we measure it? Arch Dis Child. 2017;102:393-400. [CrossRef]
  • 4. Matza LS, Patrick DL, Riley AW, et al. 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;16:461-479. [CrossRef]
  • 5. United States Food and Drug Administration. Guidance for industry: patient-reported outcome measures. Use Med Prod Dev Support Labeling Claims USA. 2009:1-39. https ://ww w.fda .gov/ downl oads/ drugs /guid ances /ucm1 93282 .pdf.
  • 6. Dellenmark-Blom M, Quitmann J, Dingemann C. Health-related quality of life in patients after repair of esophageal atresia: a review of current literature. Eur J Pediatr Surg. 2020;30:239-250. [CrossRef]
  • 7. Dellenmark-Blom M, Chaplin JE, Gatzinsky V, Jönsson L, Abrahamson K. Health-related quality of life among children, young people and adults with esophageal atresia: a review of the literature and recommendations for future research. Qual Life Res. 2015;24:2433- 2445. [CrossRef]
  • 8. Dingemann C, Meyer A, Kircher G, et al. Long-term health-related quality of life after complex and/or complicated esophageal atresia in adults and children registered in a German patient support group. J Pediatr Surg. 2014;49:631-638. [CrossRef]
  • 9. Lepeytre C., De Lagausie P., Merrot T., et al. Medium-term outcome, follow-up, and quality of life in children treated for type III esophageal atresia. Arch Pediatr. 2013;20:1096-1104. [CrossRef]
  • 10. Legrand C, Michaud L, Salleron J, et al. Long-term outcome of children with oesophageal atresia type III. Arch Dis Child. 2012;97:808- 811. [CrossRef]
  • 11. Flieder S, Dellenmark-Blom M, Witt S , et al. Generic health related quality of life after repair of esophageal atresia and its determinants within a German-Swedish Cohort. Eur J Pediatr Surg. 2019;29:75-84. [CrossRef]
  • 12. Amin R, Knezevich M, Lingongo M, et al. Long-term quality of life in neonatal surgical disease. Ann Surg. 2018;268:497-505. [CrossRef]
  • 13. Dellenmark-Blom M, Dingemann J, Witt S, et al. The esophagealatresia- quality-of-life questionnaires: feasibility, validity and reliability in sweden and germany. J Pediatr Gastroenterol Nutr. 2018;67:469-477. [CrossRef]
  • 14. Dellenmark-Blom M, Abrahamsson K, Quitmann JH, et al. Development and pilot-testing of a condition specific instrument to assess the quality of life in children and adolescents born with esophageal atresia. Dis Esophagus. 2017;30:1-9. [CrossRef]
  • 15. Wild D, Grove A, Martin M, et al. Principles of good practice for the translation and cultural adaptation process for patient reported outcomes (PRO) measures. Value Health. 2005;8:94-104. [CrossRef]
  • 16. Uneri OS, Agaoglu B, Coskun A, Memik NC. Validity and reliability of pediatric quality of life inventory for 2-to-4 year old and 5-7 year old Turkish children. Qual Life Res. 2008;17:307-315. [CrossRef]
  • 17. Sönmez S, Başbakkal Z. Türk çocuklarının Pediatrik Yaşam Kalitesi 4.0 envanterinin (PedsQL 4.0) geçerlik ve güvenirlik çalışması. Turk Klin J Pediatr. 2007;16:229-237.
  • 18. Frankhuisen R, Heijkoop R, van Herwaarden MA, et al. Validation of a disease-specific quality-of-life questionnaire in a large sample of dutch achalasia patients. Dis Esophagus. 2008;21:544-550. [CrossRef]
  • 19. Velanovich V. The development of the GERD-HRQL symptom severity instrument. Dis Esophagus. 2007;20:130-134. [CrossRef] 20. Witt S, Bloemeke J, Bullinger M, et al. Agreement between mothers’, fathers’, and children’s’ ratings on health-related quality of life in children born with esophageal atresia - a german crosssectional study. BMC Pediatr. 2019;19:330. [CrossRef]
  • 21. Rüther A, Elstein D, Wong-Rieger D, Guyatt G. Aspects of patient reported outcomes in rare diseases: a discussion paper. Int J Technol Assess Health Care. 2016;32:126-130. [CrossRef]
  • 22. Leibovitch L, Zohar I, Maayan-Mazger A, et al. Infants born with esophageal atresia with or without tracheo-esophageal fistula: short- and long-term outcomes. Isr Med Assoc J. 2018;20:161-166.
APA Soyer T, ARSLAN U, Ulukaya Durakbasa C, Aydoner S, Boybeyi Turer O, Quitmann J, Dingemann J, Dellenmark-Blom M (2021). Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia. , 640 - 650. 10.5152/tjg.2021.201005
Chicago Soyer Tutku,ARSLAN Umut Ece,Ulukaya Durakbasa Cigdem,Aydoner Sinem,Boybeyi Turer Ozlem,Quitmann Julia,Dingemann Jens,Dellenmark-Blom Michaela Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia. (2021): 640 - 650. 10.5152/tjg.2021.201005
MLA Soyer Tutku,ARSLAN Umut Ece,Ulukaya Durakbasa Cigdem,Aydoner Sinem,Boybeyi Turer Ozlem,Quitmann Julia,Dingemann Jens,Dellenmark-Blom Michaela Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia. , 2021, ss.640 - 650. 10.5152/tjg.2021.201005
AMA Soyer T,ARSLAN U,Ulukaya Durakbasa C,Aydoner S,Boybeyi Turer O,Quitmann J,Dingemann J,Dellenmark-Blom M Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia. . 2021; 640 - 650. 10.5152/tjg.2021.201005
Vancouver Soyer T,ARSLAN U,Ulukaya Durakbasa C,Aydoner S,Boybeyi Turer O,Quitmann J,Dingemann J,Dellenmark-Blom M Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia. . 2021; 640 - 650. 10.5152/tjg.2021.201005
IEEE Soyer T,ARSLAN U,Ulukaya Durakbasa C,Aydoner S,Boybeyi Turer O,Quitmann J,Dingemann J,Dellenmark-Blom M "Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia." , ss.640 - 650, 2021. 10.5152/tjg.2021.201005
ISNAD Soyer, Tutku vd. "Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia". (2021), 640-650. https://doi.org/10.5152/tjg.2021.201005
APA Soyer T, ARSLAN U, Ulukaya Durakbasa C, Aydoner S, Boybeyi Turer O, Quitmann J, Dingemann J, Dellenmark-Blom M (2021). Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia. Turkish Journal of Gastroenterology, 32(8), 640 - 650. 10.5152/tjg.2021.201005
Chicago Soyer Tutku,ARSLAN Umut Ece,Ulukaya Durakbasa Cigdem,Aydoner Sinem,Boybeyi Turer Ozlem,Quitmann Julia,Dingemann Jens,Dellenmark-Blom Michaela Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia. Turkish Journal of Gastroenterology 32, no.8 (2021): 640 - 650. 10.5152/tjg.2021.201005
MLA Soyer Tutku,ARSLAN Umut Ece,Ulukaya Durakbasa Cigdem,Aydoner Sinem,Boybeyi Turer Ozlem,Quitmann Julia,Dingemann Jens,Dellenmark-Blom Michaela Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia. Turkish Journal of Gastroenterology, vol.32, no.8, 2021, ss.640 - 650. 10.5152/tjg.2021.201005
AMA Soyer T,ARSLAN U,Ulukaya Durakbasa C,Aydoner S,Boybeyi Turer O,Quitmann J,Dingemann J,Dellenmark-Blom M Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia. Turkish Journal of Gastroenterology. 2021; 32(8): 640 - 650. 10.5152/tjg.2021.201005
Vancouver Soyer T,ARSLAN U,Ulukaya Durakbasa C,Aydoner S,Boybeyi Turer O,Quitmann J,Dingemann J,Dellenmark-Blom M Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia. Turkish Journal of Gastroenterology. 2021; 32(8): 640 - 650. 10.5152/tjg.2021.201005
IEEE Soyer T,ARSLAN U,Ulukaya Durakbasa C,Aydoner S,Boybeyi Turer O,Quitmann J,Dingemann J,Dellenmark-Blom M "Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia." Turkish Journal of Gastroenterology, 32, ss.640 - 650, 2021. 10.5152/tjg.2021.201005
ISNAD Soyer, Tutku vd. "Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia". Turkish Journal of Gastroenterology 32/8 (2021), 640-650. https://doi.org/10.5152/tjg.2021.201005