Quality of life in patients with gastroschisis is comparable with the general population: A questionnaire survey

Abstract

Aim. To evaluate long-term quality of life and somatic growth of patients with gastroschisis and compare them with the general population. Methods. We performed a questionnaire survey of the quality of life of our patients treated between 2004-2012. Results. A questionnaire was sent to our 56 patients with gastroschisis, 38 mothers of patients (68%) responded to the questionnaire. 33 of 38 mothers claim that the quality of life of their child is very good, 4 of them responded that it is good. 1 mother confessed that the quality of life was very poor. Anthropometric data show comparable results with the standard population except for patients of 1 year of age who still have lower weight (P<0.001) and body height in the 5th percentile and patients of 3 years of age who are also significantly thinner. 13% of patients in our study group have gastrointestinal problems. 9 patients (24%) attend follow-up at the neurological center (Attention Deficit Hyperactivity Disorder n=6, mental retardation n=1, dysarthria n=2), however, overall intellectual abilities are within normal range. 7 patients underwent surgery for umbilical (n=3) or inguinal hernia (n=4), 2 patients were operated on for undescended testicles, 3 patients were operated on for an adhesive ileus. 92% of mothers are very satisfied with the cosmetic result of the scar. Conclusion. The study has shown that the majority of patients after operation of gastroschisis have a very good quality of life without limitation in comparison with the general population. The presented anthropometric data confirm that the development of patients with gastroschisis is favourable.

Non-viable Neonatal Gastroschisis: Case Report

“…Overall intellectual abilities are within normal range. The anthropometric data confirm that the somatic development of patients with gastroschisis is favorable [13].…”

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

“…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 ].…”

Ansiedade, sintomas depressivos e qualidade de vida em mães de recém-nascidos com malformações congênitas: um estudo de acompanhamento durante o primeiro ano pós-parto

“…Elevados níveis de ansiedade (Lisanti, et al, 2017), estresse (Cherry, et al, 2016;Ong, et al, 2019) e depressão (Cole, et al, 2018) têm sido observados em mães de recém-nascidos admitidos em UTIN com reflexos significativos em sua qualidade de vida (dos Santos Oliveira, et al, 2016;Frybova, et al, 2017). Uma investigação precoce dos sinais iniciais de Research, Society andDevelopment, v. 10, n. 16, e193101623405, 2021 (CC BY 4.0) | ISSN 2525-3409 | DOI: http://dx.doi.org/10.33448/rsd-v10i16.23405 3 ansiedade e depressão podem contribuir para a melhoria na relação do binômio mãe-bebê (Alexopoulou, et al, 2018), no bemestar psicológico materno e no crescimento e desenvolvimento neuropsicomotor da criança (Bozkurt, et al, 2017).…”