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Rankin J, Glinianaia SV, Jardine J, et al. Measuring self-reported quality of life in 8- to 11-year-old children born with gastroschisis: Is the KIDSCREEN questionnaire acceptable?. Birth Defects Res A Clin Mol Teratol. 2016;106(4):250-6doi: 10.1002/bdra.23480.
Rankin, J., Glinianaia, S. V., Jardine, J., McConachie, H., Borrill, H., & Embleton, N. D. (2016). Measuring self-reported quality of life in 8- to 11-year-old children born with gastroschisis: Is the KIDSCREEN questionnaire acceptable?. Birth defects research. Part A, Clinical and molecular teratology, 106(4), 250-6. https://doi.org/10.1002/bdra.23480
Rankin, Judith, et al. "Measuring self-reported quality of life in 8- to 11-year-old children born with gastroschisis: Is the KIDSCREEN questionnaire acceptable?." Birth defects research. Part A, Clinical and molecular teratology vol. 106,4 (2016): 250-6. doi: https://doi.org/10.1002/bdra.23480
Rankin J, Glinianaia SV, Jardine J, McConachie H, Borrill H, Embleton ND. Measuring self-reported quality of life in 8- to 11-year-old children born with gastroschisis: Is the KIDSCREEN questionnaire acceptable?. Birth Defects Res A Clin Mol Teratol. 2016 Apr;106(4):250-6. doi: 10.1002/bdra.23480. Epub 2016 Mar 02. PMID: 26931186.
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Birth Defects Res A Clin Mol Teratol. 2016 Apr;106(4):250-6. doi: 10.1002/bdra.23480. Epub 2016 Mar 02.

Measuring self-reported quality of life in 8- to 11-year-old children born with gastroschisis: Is the KIDSCREEN questionnaire acceptable?.

Birth defects research. Part A, Clinical and molecular teratology

Judith Rankin, Svetlana V Glinianaia, Jenni Jardine, Helen McConachie, Heather Borrill, Nicholas D Embleton

Affiliations

  1. Institute of Health & Society, Newcastle University, Newcastle upon Tyne, United Kingdom.
  2. Central Manchester University Hospitals NHS Foundation Trust, Salford Child and Adolescent Mental Health Service, Manchester, United Kingdom.
  3. Health Psychology, Royal Victoria Infirmary, Newcastle upon Tyne, United Kingdom.
  4. Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, United Kingdom.

PMID: 26931186 DOI: 10.1002/bdra.23480

Abstract

BACKGROUND: Children born with gastroschisis have a good prognosis but require surgical correction and long-term follow up. There has been little research on the impact of gastroschisis on the child's health-related quality of life (QoL). The aim was to assess face and content validity of the KIDSCREEN-52 questionnaire as a measurement of self- and proxy-reported QoL in children born with gastroschisis and to evaluate self-reported QoL in these children compared with the reference population.

METHODS: In this cross-sectional exploratory study, we used the validated KIDSCREEN-52 questionnaire and individual interview with 8- to 11-year-old children born with gastroschisis who were identified from the Northern Congenital Abnormality Survey. Self-reported QoL scores were compared with age-matched UK norms by using the two-sample t test.

RESULTS: Ten children (median age 9.6 years, interquartile range 8.3-11.0) and their parents participated. Children found KIDSCREEN a helpful tool to explore their feelings and that it covered life aspects important to them. Parents believed that all priority areas were represented and that it was straightforward for their children to complete. In nine KIDSCREEN domains, children with gastroschisis had similar QoL scores to those in the reference population, and in one (psychological well-being) the mean score was significantly better (p = 0.03). All children described their health as good/very good or excellent; eight said they would not like to change anything about their body.

CONCLUSION: The KIDSCREEN questionnaire has adequate face and content validity as a measure of QoL in children with gastroschisis and is acceptable to both children and parents.

© 2016 Wiley Periodicals, Inc.

Keywords: abdominal wall defect; congenital anomaly; gastroschisis; quality of life; self report

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