Browsing by Author "De Vos, Corne"

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    A bio-psycho-social follow-up model for children born with oesophageal atresia
    (Stellenbosch : Stellenbosch University, 2024-03) De Vos, Corne; Goussard, Pierre; Sidler, Daniel; Van Wyk, Lizelle; Stellenbosch University. Faculty of Medicine and Health Sciences. Dept. of Paediatrics and Child Health. Paediatric Surgery.
    ENGLISH ABSTRACT:Oesophageal atresia (OA) is a rare congenital disease presenting with neonatal peri-operative complications and long-term consequences. We did a retrospective study investigating the 30- day outcome of neonates born with OA in our unit and found our results comparable with international studies. In a prospective study, we strived to identify different factors that should be included in the long-term clinical follow-up for OA patients. Most of our patients reported gastro-intestinal symptoms, such as dysphagia and gastro-oesophageal reflux (GER), respiratory symptoms (specifically recurrent respiratory tract infections), and feeding difficulties. We found abnormal anthropology in most of our patients. Our endoscopy results showed that all patients with symptoms such as dysphagia, food bolus impaction or GER had abnormal findings. We strongly recommend the inclusion of endoscopy in the long-term follow-up of OA patients. An CA-specific quality of life (QoL) analysis, utilizing the EA-QoL questionnaire for children aged 2-7 years (parent-report) and children aged 8-17 years (child and parent-report) was performed during follow-up visits. In the younger patient group, the eating domain was the domain most affecting the QoL of these children. In comparison, the eating and health domains were perceived as impacting QoL by both parents and children in the older age group. The older children themselves reported a high perceived impact in the body perception domain, making this an essential topic to address in the long-term follow-up of older OA children. In a self-administered psycho-social follow-up of parents of OA children, we identified that these parents were at risk for developing post-traumatic stress disorder (PTSD) symptoms as well as anxiety. Parents with OA children older than 6 months at the time of the visit, at ending routine out-patient department visits, and those with major post-operative complications during the neonatal period were at higher risk for the development of PTSD symptoms, when compared to their counterparts. Prematurity was a significant risk factor for the presence of anxiety in this group of parents. A prospective international collaboration revealed the importance of OA-specific support groups as part of the multidisciplinary team (MDT). Support groups have several benefits for their members, which include sharing of similar experiences. We highlighted the need to include siblings in the family-centred approach to difficult cases, especially if these neonates are admit ed to the neonatal intensive care unit. We concluded that a complete bio-psycho-social long-term follow-up programme is essential for children born with OA, forming part of an MDT approach. These teams should be consulted in the neonatal phase and care should be continued through the paediatric years into adulthood. A comprehensive bio-psycho-social follow-up programme should include investigations of CA-specific symptoms with appropriate treatment, QoL assessments of patients, and regular psycho-social follow-up of parents, in an at empty to improve the overall outcome of children born with OA and their families.