Children with anorectal malformations, hirschsprung's disease and their siblings: proxy-reports and self-reports.

E.E. Hartman, F.J. Oort, D.C. Aronson, A.F.W. van der Steeg, H.A. Heij, E. van Heum, G.C. Madern, D.C. van der Zee, I. de Blauw, A. van Dijk, M.A.G. Sprangers

Research output: Contribution to journalArticleScientificpeer-review

Abstract

Objectives:
The aim of the present study was to compare parent proxy reports with that of self-reports of children with anorectal malformations (ARMs) or Hirschsprung disease (HD) and healthy siblings and thereafter was examine whether these comparisons differed between patients and their siblings.
Methods:
Parents (n = 98) of either children with ARM (n = 44) or HD (n = 54) and a healthy sibling (n = 98) recruited from the 6 Dutch pediatric surgical centers and from the ARM and HD patient societies were included in this cross-sectional multilevel study. Agreement between child self-reports and parent proxy reports was compared through mean differences and through (intraclass) correlations. We conducted multilevel analyses to take dependencies between assessments within families into account.
Results:
All of the children (children with ARM or HD and their siblings) reported more pain and symptoms than their parents reported. We also found that only children with ARM or HD reported less positive emotions than their parents. Furthermore, higher correlations were found between parent proxy reports and patient-self reports than between parent proxy reports and sibling self-reports on cognitive functioning and social interaction.
Conclusions:
Parents tend to overestimate the physical functioning of both their ill and healthy children, and overestimate the emotional functioning of only their children with ARM or HD. Furthermore, children with ARM or HD and parents agree more on health-related quality of life domains than healthy children and parents.
Original languageEnglish
Pages (from-to)630-635
JournalJournal of Pediatric Gastroenterology and Nutrition
Volume61
Issue number6
DOIs
Publication statusPublished - 2015

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Hirschsprung Disease
Proxy
Self Report
Siblings
Parents
Only Child
Cross-Sectional Studies
Pediatrics

Cite this

Hartman, E.E. ; Oort, F.J. ; Aronson, D.C. ; van der Steeg, A.F.W. ; Heij, H.A. ; van Heum, E. ; Madern, G.C. ; van der Zee, D.C. ; de Blauw, I. ; van Dijk, A. ; Sprangers, M.A.G. / Children with anorectal malformations, hirschsprung's disease and their siblings: proxy-reports and self-reports. In: Journal of Pediatric Gastroenterology and Nutrition. 2015 ; Vol. 61, No. 6. pp. 630-635.
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title = "Children with anorectal malformations, hirschsprung's disease and their siblings: proxy-reports and self-reports.",
abstract = "Objectives: The aim of the present study was to compare parent proxy reports with that of self-reports of children with anorectal malformations (ARMs) or Hirschsprung disease (HD) and healthy siblings and thereafter was examine whether these comparisons differed between patients and their siblings.Methods: Parents (n = 98) of either children with ARM (n = 44) or HD (n = 54) and a healthy sibling (n = 98) recruited from the 6 Dutch pediatric surgical centers and from the ARM and HD patient societies were included in this cross-sectional multilevel study. Agreement between child self-reports and parent proxy reports was compared through mean differences and through (intraclass) correlations. We conducted multilevel analyses to take dependencies between assessments within families into account.Results: All of the children (children with ARM or HD and their siblings) reported more pain and symptoms than their parents reported. We also found that only children with ARM or HD reported less positive emotions than their parents. Furthermore, higher correlations were found between parent proxy reports and patient-self reports than between parent proxy reports and sibling self-reports on cognitive functioning and social interaction.Conclusions: Parents tend to overestimate the physical functioning of both their ill and healthy children, and overestimate the emotional functioning of only their children with ARM or HD. Furthermore, children with ARM or HD and parents agree more on health-related quality of life domains than healthy children and parents.",
author = "E.E. Hartman and F.J. Oort and D.C. Aronson and {van der Steeg}, A.F.W. and H.A. Heij and {van Heum}, E. and G.C. Madern and {van der Zee}, D.C. and {de Blauw}, I. and {van Dijk}, A. and M.A.G. Sprangers",
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language = "English",
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pages = "630--635",
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issn = "0277-2116",
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Hartman, EE, Oort, FJ, Aronson, DC, van der Steeg, AFW, Heij, HA, van Heum, E, Madern, GC, van der Zee, DC, de Blauw, I, van Dijk, A & Sprangers, MAG 2015, 'Children with anorectal malformations, hirschsprung's disease and their siblings: proxy-reports and self-reports.', Journal of Pediatric Gastroenterology and Nutrition, vol. 61, no. 6, pp. 630-635. https://doi.org/10.1097/MPG.0000000000000855

Children with anorectal malformations, hirschsprung's disease and their siblings: proxy-reports and self-reports. / Hartman, E.E.; Oort, F.J.; Aronson, D.C.; van der Steeg, A.F.W.; Heij, H.A.; van Heum, E.; Madern, G.C.; van der Zee, D.C.; de Blauw, I.; van Dijk, A.; Sprangers, M.A.G.

In: Journal of Pediatric Gastroenterology and Nutrition, Vol. 61, No. 6, 2015, p. 630-635.

Research output: Contribution to journalArticleScientificpeer-review

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T1 - Children with anorectal malformations, hirschsprung's disease and their siblings: proxy-reports and self-reports.

AU - Hartman, E.E.

AU - Oort, F.J.

AU - Aronson, D.C.

AU - van der Steeg, A.F.W.

AU - Heij, H.A.

AU - van Heum, E.

AU - Madern, G.C.

AU - van der Zee, D.C.

AU - de Blauw, I.

AU - van Dijk, A.

AU - Sprangers, M.A.G.

PY - 2015

Y1 - 2015

N2 - Objectives: The aim of the present study was to compare parent proxy reports with that of self-reports of children with anorectal malformations (ARMs) or Hirschsprung disease (HD) and healthy siblings and thereafter was examine whether these comparisons differed between patients and their siblings.Methods: Parents (n = 98) of either children with ARM (n = 44) or HD (n = 54) and a healthy sibling (n = 98) recruited from the 6 Dutch pediatric surgical centers and from the ARM and HD patient societies were included in this cross-sectional multilevel study. Agreement between child self-reports and parent proxy reports was compared through mean differences and through (intraclass) correlations. We conducted multilevel analyses to take dependencies between assessments within families into account.Results: All of the children (children with ARM or HD and their siblings) reported more pain and symptoms than their parents reported. We also found that only children with ARM or HD reported less positive emotions than their parents. Furthermore, higher correlations were found between parent proxy reports and patient-self reports than between parent proxy reports and sibling self-reports on cognitive functioning and social interaction.Conclusions: Parents tend to overestimate the physical functioning of both their ill and healthy children, and overestimate the emotional functioning of only their children with ARM or HD. Furthermore, children with ARM or HD and parents agree more on health-related quality of life domains than healthy children and parents.

AB - Objectives: The aim of the present study was to compare parent proxy reports with that of self-reports of children with anorectal malformations (ARMs) or Hirschsprung disease (HD) and healthy siblings and thereafter was examine whether these comparisons differed between patients and their siblings.Methods: Parents (n = 98) of either children with ARM (n = 44) or HD (n = 54) and a healthy sibling (n = 98) recruited from the 6 Dutch pediatric surgical centers and from the ARM and HD patient societies were included in this cross-sectional multilevel study. Agreement between child self-reports and parent proxy reports was compared through mean differences and through (intraclass) correlations. We conducted multilevel analyses to take dependencies between assessments within families into account.Results: All of the children (children with ARM or HD and their siblings) reported more pain and symptoms than their parents reported. We also found that only children with ARM or HD reported less positive emotions than their parents. Furthermore, higher correlations were found between parent proxy reports and patient-self reports than between parent proxy reports and sibling self-reports on cognitive functioning and social interaction.Conclusions: Parents tend to overestimate the physical functioning of both their ill and healthy children, and overestimate the emotional functioning of only their children with ARM or HD. Furthermore, children with ARM or HD and parents agree more on health-related quality of life domains than healthy children and parents.

U2 - 10.1097/MPG.0000000000000855

DO - 10.1097/MPG.0000000000000855

M3 - Article

VL - 61

SP - 630

EP - 635

JO - Journal of Pediatric Gastroenterology and Nutrition

JF - Journal of Pediatric Gastroenterology and Nutrition

SN - 0277-2116

IS - 6

ER -