Explaining Change in Quality of Life of Children and Adolescents With Anorectal Malformations or Hirschsprung Disease

Hartman, Esther; Oort, Frans J.; Aronson, Daniël C.; Hanneman, Marianne J. G.; Heurn, Ernest van; Langen, Zacharias J. de; Madern, Gerard C.; Rieu, P.N.M.A.; Zee, David C. van der; Looyaard, Nic; Silfhout-Bezemer, Marina van; Sprangers, Mirjam A. G.

doi:10.1542/peds.2006-0212

Cited by 51 publications

(45 citation statements)

References 19 publications

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“…9 This has also been supported by the 2007 Hartman et al study. 1 The similar results except for parent Psycho SS in our study support this finding. The lower Psycho SS in the parent proxy report in the study group may indicate a QoL decrease due to the congenital anomaly corrected by surgery.…”

Section: Discussionsupporting

confidence: 89%

“…12 A literature review has revealed few studies on HRQoL in children with congenital abnormalities and these are mostly from Northern European countries. 1,9,13,14 As QoL is a subjective, multidimensional experience of wellbeing that is culturally constructed more studies are needed to understand HRQoL in children with congenital abnormalities from various communities. 15 We came across only one study from Turkey on the QoL in children with anorectal malformations.…”

mentioning

confidence: 99%

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The Perception of the Quality of Life in Turkish Children Who Have Undergone Surgical Correction of a Congenital Gastrointestinal and Abdominal Anomaly

Çavuşoğlu¹,

Üneri²,

Yağız³

et al. 2012

Turkiye Klinikleri J Med Sci

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Section: Discussionsupporting

confidence: 89%

mentioning

confidence: 99%

The Perception of the Quality of Life in Turkish Children Who Have Undergone Surgical Correction of a Congenital Gastrointestinal and Abdominal Anomaly

Çavuşoğlu¹,

Üneri²,

Yağız³

et al. 2012

Turkiye Klinikleri J Med Sci

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“…The majority of studies either used reference data or a control group for comparison; the remaining studies used within-group age comparisons 27,28,31 or compared one congenital condition with a related condition. 35 Overall, irrespective of the condition or the instrument used, children often reported similar scores for their QoL compared with the reference scores. For example, in one study, "school environment" was the only QoL domain reported to be significantly better in children with cerebral palsy according to the KIDSCREEN questionnaire.…”

Section: Overview Of Included Studiesmentioning

confidence: 90%

Self-Reported Quality of Life of Young Children With Conditions From Early Infancy: A Systematic Review

Jardine¹,

Glinianaia

McConachie

et al. 2014

Pediatrics

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CONTEXT: There is little consistency in the use of instruments for measuring self-reported quality of life (QoL) in young children. OBJECTIVE:To systematically review studies of self-reported QoL in children aged ,12 years with congenital health conditions, and to examine the agreement between self-and proxy-reports.DATA SOURCES: Literature databases (MEDLINE, EMBASE, Web of Science, PsychINFO) were systematically searched, reference lists of eligible studies were scanned.

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“…To obtain more adequate results, it would be better to also include reports from the children [34][35][36]. In the present study, the children themselves were not asked whether they had any memories of the medical treatment.…”

Section: Discussionmentioning

confidence: 99%

Children with high and intermediate imperforate anus: remembering and talking about medical treatment carried out early in life

et al. 2008

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Treatment of children with high and intermediate imperforate anus entails several different surgical procedures during the first 3-12 months of life, which are accompanied by a strict follow-up treatment regimen. It has not been studied whether the children remember this treatment carried out early in life. Research has shown that small children may demonstrate so-called non-verbal memories of salient events occurring in early childhood. The purpose was to examine whether children with imperforate anus showed distressing memories of previous medical treatment and whether parent-child dialog about medical treatment is related to the child's psychosocial functioning later in life. Parents of 25 children (9 boys, 16 girls) with high and intermediate imperforate anus participated in the study. The mean age among the children was 10.5 years (range 8.0-13.6). A comparison group of 30 children (5 boys and 25 girls) with juvenile chronic arthritis also participated in the study. The mean age was 10.6 years (range 7.8-13.6). All parents answered the Child Behavior Checklist (CBCL/4-18) and a study-specific questionnaire. Children in both groups were reported to show distressing memories of early treatment. Children who had been talked to showed good psychosocial function and were in a better mood and less angry than those who had not been talked to. Parent-child discussions about the child's experiences of medical treatment did not seem to be harmful or in any other way detrimental to the child, instead such discussions seemed to facilitate the child's psychosocial functioning.

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Explaining Change in Quality of Life of Children and Adolescents With Anorectal Malformations or Hirschsprung Disease

Cited by 51 publications

References 19 publications

The Perception of the Quality of Life in Turkish Children Who Have Undergone Surgical Correction of a Congenital Gastrointestinal and Abdominal Anomaly

The Perception of the Quality of Life in Turkish Children Who Have Undergone Surgical Correction of a Congenital Gastrointestinal and Abdominal Anomaly

Self-Reported Quality of Life of Young Children With Conditions From Early Infancy: A Systematic Review

Children with high and intermediate imperforate anus: remembering and talking about medical treatment carried out early in life

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