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Development and pilot-testing of a condition-specific instrument to assess the quality-of-life in children and adolescents born with esophageal atresia

Dellenmark-Blom, M ; Abrahamsson, K ; Quitmann, J. H ; Sommer, R ; Witt, S ; Dingemann, J ; Flieder, S ; Jönsson, L ; Gatzinsky, V ; Bullinger, M ; Ure, B. M ; Dingemann, C ; Chaplin, J. E

Diseases of the esophagus, 2017-07, Vol.30 (7), p.1-9 [Periódico revisado por pares]

United States: Oxford University Press

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Título:
Development and pilot-testing of a condition-specific instrument to assess the quality-of-life in children and adolescents born with esophageal atresia
Autor: Dellenmark-Blom, M ; Abrahamsson, K ; Quitmann, J. H ; Sommer, R ; Witt, S ; Dingemann, J ; Flieder, S ; Jönsson, L ; Gatzinsky, V ; Bullinger, M ; Ure, B. M ; Dingemann, C ; Chaplin, J. E
Assuntos: Adolescent ; Adult ; Body Image ; Child ; Child, Preschool ; Eating ; Esophageal Atresia - complications ; Esophageal Atresia - psychology ; Esophageal Atresia - surgery ; Female ; Focus Groups ; Germany ; Health Status ; Humans ; Male ; Middle Aged ; Parents ; Pilot Projects ; Psychometrics ; Quality of Life ; Reproducibility of Results ; Review Literature as Topic ; Social Isolation ; Social Participation ; Stress, Psychological - etiology ; Surveys and Questionnaires ; Sweden
É parte de: Diseases of the esophagus, 2017-07, Vol.30 (7), p.1-9
Notas: ObjectType-Article-1
SourceType-Scholarly Journals-1
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Descrição: SUMMARY The survival rate of children with esophageal atresia has today reached 95%. However, children are at risk of chronic morbidity related to esophageal and respiratory dysfunction, and associated anomalies. This study describes the pilot testing of a condition-specific health-related quality-of-life instrument for children with esophageal atresia in Sweden and Germany, using a patient-derived development approach consistent with international guidelines. Following a literature review, standardized focus groups were conducted with 30 Swedish families of children with esophageal atresia aged 2–17 years. The results were used for item generation of two age-specific pilot questionnaire versions. These were then translated from Swedish into German with considerations of linguistic and semantical perspectives. The 30-item pilot questionnaire for children aged 2–7 years was completed by 34 families (parent report), and the 50-item pilot questionnaire for children aged 8–17 years was completed by 52 families (51 child report, 52 parent report), with an overall response rate of 96% in the total sample. Based on predefined psychometric criteria, poorly performing items were removed, resulting in an 18-item version with three domains (Eating, Physical health and treatment, Social isolation and stress,) for children aged 2–7 years and a 26-item version with four domains (Eating, Social relationships, Body perception, and Health and well-being) for children aged 8–17 years. Both versions demonstrated good internal consistency reliability and acceptable convergent and known-groups validity for the total scores. The study identified specific health-related quality-of-life domains for pediatric patients with esophageal atresia, highlighting issues that are important for follow-up care. After field testing in a larger patient sample, this instrument can be used to enhance the evaluation of pediatric surgical care.
Editor: United States: Oxford University Press
Idioma: Inglês

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Development and pilot-testing of a condition-specific instrument to assess the quality-of-life in children and adolescents born with esophageal atresia

Dellenmark-Blom, M ; Abrahamsson, K ; Quitmann, J. H ; Sommer, R ; Witt, S ; Dingemann, J ; Flieder, S ; Jönsson, L ; Gatzinsky, V ; Bullinger, M ; Ure, B. M ; Dingemann, C ; Chaplin, J. E

United States: Oxford University Press

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