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

Rankin, Judith; Glinianaia, Svetlana V.; Jardine, Jenni; Borrill, Heather; Embleton, Nicholas D.

doi:10.1002/bdra.23480

Cited by 7 publications

(3 citation statements)

References 31 publications

(47 reference statements)

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“…In comparison with our study, previous literature showed overall health status in line with normative expectations [5, 28–30]. Our study showed that children with gastroschisis had slightly lower scores on the school functioning subscale of the PedsQL than their matched controls.…”

Section: Discussionsupporting

confidence: 86%

Gastroschisis at school age: what do parents report?

et al. 2019

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Children with gastroschisis are at high risk of morbidity in early life, which could affect long-term outcomes. We determined parent-reported outcomes in school-aged children born in 2000–2012, using paper questionnaires. Parent-perceived child vulnerability and motor function were compared with the Dutch reference data; parent-rated data on cognition, health status, quality of life, and behavior were compared with those of controls matched for age, gender, and maternal education level. Of 77 eligible participants, 31 (40%) returned the questionnaires. Parent-reported motor function was normal in 23 (74%) children. Total scores on health status, quality of life, and behavior did not differ significantly from those of matched controls. Children with gastroschisis had lower scores on cognition (median (interquartile range); 109 (87–127)) than their matched controls (124 (113–140); p = 0.04). Neonatal intestinal failure and increased parent-perceived vulnerability were associated with lower scores on cognition (β − 25.66 (95% confidence interval − 49.41, − 1.91); − 2.76 (− 5.27, − 0.25), respectively). Conclusion : Parent-reported outcomes of school-aged children with gastroschisis were mainly reassuring. Clinicians and parents should be aware of the higher risk of cognitive problems, especially in those with neonatal intestinal failure or increased parent-perceived vulnerability. We recommend multidisciplinary follow-up at school age of children with gastroschisis and neonatal intestinal failure. What is Known: • Many infants with gastroschisis experience morbidity in early life. • Data on developmental outcomes and daily functioning in children with gastroschisis beyond the age of 5 years are scarce and conflicting. What is New: • Parents of school-aged children treated for gastroschisis report normal motor function, health status, quality of life, and behavior. • Children with gastroschisis, especially those with intestinal failure, may be at risk for cognitive problems at school age. Parents who reported their child as being more vulnerable also reported more cognitive problems at school age. Electronic supplementary material The online version of this article (10.1007/s00431-019-03417-5) contains supplementary material, which is available to authorized users.

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Section: Discussionsupporting

confidence: 86%

Gastroschisis at school age: what do parents report?

et al. 2019

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“…Rankin et al reported that children with gastroschisis had similar QoL compared with age-matched children from a background population at the age of 8-11 years, yet this study suffered from small sample size. 16 Another larger study showed that simple and complicated gastroschisis patients have similar quality of life after the age of two years compared to healthy children, which is reassuring when counseling the parents. 17…”

Section: Need For Surgery In Childhood and Adolescencementioning

confidence: 94%

Medium and long-term outcomes of gastroschisis

Suominen

Rintala

2018

Seminars in Pediatric Surgery

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As survival of gastroschisis patients has improved significantly, it has become apparent that longitudinal follow up strategies need to be developed. Problems concerning patients with gastroschisis are usually associated with gastrointestinal morbidity, but there is mounting evidence that also neurodevelopmental, cognitive, behavioral and late-onset auditory sequelae exist. The presence of associated anomalies, as well as complex features (bowel atresia, necrosis, volvulus, perforation) increase morbidity and impact long-term outcomes. Multidisciplinary follow-up is required, and the key elements of such follow-up are presented here.

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“…The literature search on QoL measures that had been used in gastroschisis yielded 9 papers published from 2010 in which QoL had been reported. Of these, 6 had used the PedsQL score[ 47 – 52 ] two had used the KIDCSREEN instrument [ 53 , 54 ] and one had used an unvalidated scoring system [ 55 ].…”

Section: Volume/outcome Relationshipmentioning

confidence: 99%

European reference network for rare inherited congenital anomalies (ERNICA) evidence based guideline on the management of gastroschisis

Burgos,

Irvine,

Vivanti

et al. 2024

Orphanet J Rare Dis

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Background The European Reference Network for rare Inherited Congenital Anomalies, ERNICA, guidelines for gastroschisis cover perinatal period to help teams to improve care. Method A systematic literature search including 136 publications was conducted. Research findings were assessed following the GRADE methodology. The evidence to decision framework was used to determine the strength and direction of recommendations. Results The mode or timing of delivery do not impact neonatal mortality, risk of NEC or time on parenteral nutrition (PN). Intra or extra abdominal bowel dilatation predict complex gastroschisis and longer length of hospital stay but not increased perinatal mortality. Outcomes after Bianchi procedure and primary fascia closure under anesthesia are similar. Sutureless closure decreases the rate of surgical site infections and duration of ventilation compared to surgical closure. Silo-staged closure with or without intubation results in similar outcomes. Outcomes of complex gastroschisis (CG) undergoing early or delayed surgical repair are similar. Early enteral feeds starting within 14 days is associated with lower risk of surgical site infection. Recommendations The panel suggests vaginal birth between 37 and 39 w in cases of uncomplicated gastroschisis. Bianchi’s approach is an option in simple gastroschisis. Sutureless closure is suggested when general anesthesia can be avoided, sutured closure. If anesthesia is required. Silo treatment without ventilation and general anesthesia can be considered. In CG with atresia primary intestinal repair can be attempted if the condition of patient and intestine allows. Enteral feeds for simple gastroschisis should start within 14 days.

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

Abstract: 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.

Cited by 7 publications

References 31 publications

Gastroschisis at school age: what do parents report?

Gastroschisis at school age: what do parents report?

Medium and long-term outcomes of gastroschisis

European reference network for rare inherited congenital anomalies (ERNICA) evidence based guideline on the management of gastroschisis

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