Psychological distress and anxiety show a positive correlation with caregivers' feeling of burden, and may disrupt family well-being. Early identification of high-risk situations is essential in order to plan specific psychosocial aid efficiently.
Background: Healthcare professionals advise earlier gastrostomy tube (GT) placement in children with severe developmental disabilities, marked feeding disorders and risk of malnutrition. However, a delay in acceptance of the procedure by parents/guardians is the main issue of concern. The present study aimed to investigate: (i) parental satisfaction with GT feeding and whether parents/carers would have accepted earlier GT placement and (ii) subsequent nutritional outcome.
Methods: Twenty‐six disabled children with GT feeding were recruited. A structured questionnaire by telephone was held to record parental perceptions of GT (mainly satisfaction with the procedure and patient management). A longitudinal study (0–6–12 months) was designed to investigate anthropometric outcome. Nutritional support mode and GT‐related complications were also recorded.
Results: Parents/carers showed high satisfaction (91%). Furthermore, 87% recognised that they would have accepted an earlier placement of the GT had they anticipated the outcome. Patient management and family dynamics were acknowledged to have improved considerably. Nutritional assessment demonstrated a positive trend in weight. Height improved significantly 6 months post‐implantation (P = 0.045) and body mass index improved after 12 months (P = 0.041). When comparing nutritional outcome between children in whom the GT was placed before 18 months of age and those in whom it was placed later, height was found to improve significantly in the first group (P = 0.04).
Conclusions: Most parents/carers would have agreed to earlier GT feeding of their children had they acknowledged its benefits. Although nutritional response was positive, it was less so than the parental perception of children’s overall improvement. Growth rates were significantly increased when GT was placed early in life.
The SAGA-8 questionnaire has a high discriminatory power to assess the degree of satisfaction experienced by parents/caregivers of children with HEN by GT and, subsequently, the patients' wellbeing.
The aim of the study was to assess the anthropometric outcomes after gastrostomy tube (GT) placement in children with chronic diseases and the influence of primary diagnosis, age, and nutritional support. A longitudinal, multicenter, and prospective study was performed evaluating 65 children with GT feeding and chronic diseases (61.5% with neurological disease). Each child was evaluated three times (at baseline and at 6 and 12 months after GT placement) and the following data was collected: primary diagnosis, age at GT placement, anthropometry, and feeding regime. Repeated measures ANOVA were used to analyze the main effects (intra and intergroup) and the interactions effects on weight gain and linear growth at 6 and 12 months after GT placement. All patients significantly improved their body mass index (BMI)-for-age z-score (p < 0.001) and height-for-age z-score (p < 0.05) after 6 and 12-month of follow-up. BMI gain increased significantly the first 6 months, followed by a plateau, while height followed a linear trend. Children with GT placement before 18 months old experienced an accelerated growth rate during the first 6 months post-GT. This technique showed the effectiveness of GT placement improving nutritional status and growth catch up regardless of their primary diagnosis and the type of nutritional support.
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