RESUMO
This observational study describes the procedure technique, safety outcomes, and patient responses to celiac plexus blockade (CPB) in children with severe neurodisability with refractory feed intolerance, feed induced pain or feed induced dystonia (FID). Method: A review of the pathophysiological response to feeding in children with significant neurodisability and the effect on the neuroenteric system. A 2-stage CT-guided temporary celiac plexus blockade followed by neurolysis technique is described. We compile a case series of 5 patients with life limiting conditions and significant disability undergoing CPB in a single tertiary pediatric hospital. Results: A total of 10 separate procedures in 5 children were completed. A positive outcome was observed in 3 out of 4 cases of pediatric FID. Two of the three patients on parenteral nutrition had improved feed tolerance postprocedure. All children tolerated the procedure well, no postprocedure complications were documented. Conclusions: In selected cases, children with life-threatening feed induced dystonia or effective intestinal failure can be safely treated with celiac plexus blockade when other therapies have failed.
RESUMO
BACKGROUND: The Paediatric Endoscopy Global Rating Scale (P-GRS) is a quality improvement tool used in the UK. An important aspect of this includes regular surveys on the patient and/or carer's endoscopy experience. The aim of our study was to design and implement a patient/carer experience questionnaire. METHODS: This questionnaire was designed to obtain feedback on patient and/or carer satisfaction with their endoscopy experience. Question selection was based on relevant measures in the endoscopy Global Rating Scale, with input from clinical governance, Patient Advice and Liaison Service and a hospital youth forum. This was distributed to patients and/or carers in three UK paediatric endoscopy services during six surveys between 2013 and 2018. Data were then collated and analysed on Microsoft Excel for Office 365 MSO (16.0.11901.20070). RESULTS: Overall, 830 endoscopic procedures occurred during the six survey periods. 270 questionnaires were returned. Feedback from the questionnaires were mostly positive (overall satisfaction rated 'excellent' or 'good' was seen in 87% of responses) but also identified areas of improvement, such as in managing postprocedure pain and having a separate space for adolescents for preprocedure discussions. Improvements in satisfaction scores were noted in one unit over time, particularly in preprocedure preparation (from 86% to 100%), and overall satisfaction with endoscopy experience (81%-100%). CONCLUSION: All three paediatric endoscopy services found this questionnaire useful in identifying areas needing improvement and in demonstrating compliance with measures within the P-GRS quality of patient experience domain. Further work includes exploring ways to increase response rates, as well as developing age-appropriate and electronic versions.