Schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis: a Swedish study

Orphanet Journal of Rare Diseases

Research

AM. Tollne¹  J. F. Svensson²  E. Öst²  H. Engstrand Lilja²  L. Jönsson³  K. Abrahamsson³  V. Gatzinsky³  M. Dellenmark-Blom³  S. Örnö Ax³  A.-M. Kassa⁴  P. Stenström⁵  E. Omling⁵  C. Reilly⁶ 

[1] Department of Pediatric Surgery, Karolinska University Hospital, Stockholm, Sweden;Department of Pediatric Surgery, Karolinska University Hospital, Stockholm, Sweden;Department of Women’s and Children’s Health, Karolinska Institutet, Stockholm, Sweden;Department of Pediatric Surgery, Queen Silvia Children’s Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden;Department of Pediatrics, Institute of Clinical Sciences, Queen Silvia Children’s Hospital, Gothenburg University, 416 85, Gothenburg, Sweden;Department of Pediatric Surgery, University Children’s Hospital, Uppsala, Sweden;Department of Women’s and Children’s Health, Uppsala University, Uppsala, Sweden;Department of Pediatrics, Clinical Sciences, Lund University, Lund, Sweden;Department of Pediatric Surgery, Skane University Hospital Lund, Lund, Sweden;Department of Pediatrics, Institute of Clinical Sciences, Queen Silvia Children’s Hospital, Gothenburg University, 416 85, Gothenburg, Sweden;

关键词: Esophageal atresia;    Rare disease;    Schooling experiences;    School support;    Special education mental health;   

DOI  :  10.1186/s13023-023-02846-8

 received in 2023-04-27, accepted in 2023-07-26,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundChildren with long-gap esophageal atresia (LGEA) risk living with aerodigestive morbidity and mental health difficulties. No previous study has investigated their experiences of schooling, despite the importance of schools in children’s development, learning and social relationships. We aimed to describe experiences of schooling in children with LGEA in Sweden in comparison with children with EA who had primary anastomosis.MethodChildren with LGEA aged 3–17 were recruited nationwide in Sweden. One parent completed a survey on their child’s school-based supports (according to definitions from the Swedish National Agency for Education), school absence, school satisfaction, school functioning (PedsQL 4.0), mental health (Strength and Difficulties Questionnaire) and current symptomatology. School data were compared between 26 children with LGEA to that from 95 children with EA who had PA, a hypothesized milder affected group. Mental health level was determined using validated norms; abnormal ≥ 90 percentile. Data were analyzed using descriptives, correlation and Mann–Whitney-U test. Significance level was p < 0.05.ResultsFormal school-based support was reported in 17 (65.4%) children with LGEA and concerned support with nutritional intake (60%), education (50%) and medical/special health needs (35%). The prevalence of school-based support was significantly higher compared to children with PA overall (36.8%, p = 0.013) and regarding nutritional intake support (20%, p < 0.001). In children with LGEA, school-based support was related to low birth weight (p = 0.036), young child age (p = 0.014), height ≤ −2SD for age/sex (p = 0.024) and an increased number of aerodigestive symptoms (p < 0.05). All children with LGEA who had abnormal mental health scores had school-based support, except for one child. Nine children with LGEA (36%) had school absence ≥ 1times/month the past year, more frequently because of colds/airway infections (p = 0.045) and GI-specific problems compared to PA (p = 0.003). School functioning scores were not significantly different from children with PA (p = 0.34) but correlated negatively with school-based support (< 0.001) and school absence (p = 0.002). One parent out of 26 reported their child’s school satisfaction as “not good”.ConclusionsChildren with LGEA commonly receive school-based support, reflecting multifaceted daily needs and disease severity. School absence is frequent and related to poorer school functioning. Future research focusing on academic achievement in children with EA is needed.

【 授权许可】

CC BY   
© Institut National de la Santé et de la Recherche Médicale (INSERM) 2023

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Fig. 9