Long-term Quality of Life in Neonatal Surgical Disease

Amin, Ruchi; Knezevich, Michelle; Lingongo, Melissa; Szabó, Anikó; Yin, Ziyan; Oldham, Keith T.; Calkins, Casey M.; Sato, Thomas T.; Arca, Marjorie J.

doi:10.1097/sla.0000000000002918

Cited by 39 publications

(43 citation statements)

References 26 publications

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“…described HRQoL among children and adolescents born with EA, [24][25][26][27][28][29][30][31][32][33][34][35][36][37][38] three of which 32,34,38 also reported on HRQoL among adults (patients >18 years old). The remaining two articles described HRQoL among adults with EA only.…”

Section: Current Literature Regarding Hrqol In Patients Following Ea mentioning

confidence: 99%

“…The remaining two articles described HRQoL among adults with EA only. 39,40 Two articles described HRQoL in patients with EA recruited from the USA 33,39 and three articles described patients resident in Asian countries. 25,28,34 Moreover, six articles (41%) reported on HRQoL in international samples, in five of which HRQoL in Swedish-German pediatric EA cohorts was described.…”

Section: Current Literature Regarding Hrqol In Patients Following Ea mentioning

confidence: 99%

“…Of four studies using PedsQL 4.0 generic core scales, 25,31,33,34 three compared the HRQoL of children with EA with those of general and/or healthy samples. 31,33,34 One Swedish-Ger-man study 31 demonstrated significantly lower overall HRQoL in pediatric patients with repaired EA, than in a healthy sample (parent report). Similarly, in a study from the USA, 33 the overall PedsQL scores were lower in children with EA than in healthy children.…”

Section: Generic Hrqol In Children Adolescents and Adults After Ea mentioning

confidence: 99%

“…31,33,34 One Swedish-Ger-man study 31 demonstrated significantly lower overall HRQoL in pediatric patients with repaired EA, than in a healthy sample (parent report). Similarly, in a study from the USA, 33 the overall PedsQL scores were lower in children with EA than in healthy children. However, they were higher than in children with other chronic diseases.…”

Section: Generic Hrqol In Children Adolescents and Adults After Ea mentioning

confidence: 99%

“…This indicates restricted HRQoL in 75% of EA patients. Three studies of children 25,31,33 and one of adults with EA 39 described the patients' HRQoL from the perspective of generic HRQoL domains. From the ages of 8 to 18, Swedish and German EA patients had significantly better emotional functioning compared with healthy references, whereas better social and psychosocial functioning were only observed among Swedish EA patients.…”

Section: Generic Hrqol In Children Adolescents and Adults After Ea mentioning

confidence: 99%

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Health-Related Quality of Life in Patients after Repair of Esophageal Atresia: A Review of Current Literature

2020

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Patients born with esophageal atresia (EA) require advanced reconstructive surgery and risk long-term digestive and respiratory morbidity. We describe the state of current literature on these patients' health-related quality of life (HRQoL) and give recommendations for future research. A literature search was conducted in PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsychINFO and included articles from 2015 to December 28, 2019. Criteria for selecting articles were predefined. Seventeen articles describing HRQoL among children, adolescents, and adults were found, two of which focused on adults only. Six studies included international samples and among 15 quantitative studies sample sizes varied from 17 to 928 (median: 46). Seven different HRQoL questionnaires were used for children, three of which were specially adjusted for EA, of which one was reported validity and reliability. Four questionnaires were used for adults, one of which was generic and three symptom-specific, referring to swallowing or to the gastrointestinal tract. Hence, HRQoL outcomes were described differently. However, several studies of pediatric patients with EA revealed associations between lower HRQoL and particular congenital and surgical characteristics, which reflected disease severity. In two out of three articles, pediatric patients with EA had lower overall scores than healthy children. Digestive symptoms consistently lowered HRQoL scores in children and adults. Prior to 2015, only 12 studies were published, which illustrate a recent expansion in this field. Various HRQoL aspects and heterogeneous samples are examined, and outcomes differently reported. Current literature suggests that clinical subgroups of children with EA present with impaired HRQoL and that digestive symptomology influence HRQoL negatively. Conclusions of studies focusing on adults with EA are difficult to draw. Additional research is required.

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Section: Current Literature Regarding Hrqol In Patients Following Ea mentioning

confidence: 99%

Section: Current Literature Regarding Hrqol In Patients Following Ea mentioning

confidence: 99%

Section: Generic Hrqol In Children Adolescents and Adults After Ea mentioning

confidence: 99%

Section: Generic Hrqol In Children Adolescents and Adults After Ea mentioning

confidence: 99%

Section: Generic Hrqol In Children Adolescents and Adults After Ea mentioning

confidence: 99%

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Health-Related Quality of Life in Patients after Repair of Esophageal Atresia: A Review of Current Literature

2020

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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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