%0 Journal Article
%T Are we informing our patients correctly? Evaluation of perioperative counselling for paediatric intestinal stoma formation: a national study.
%A Roberts R
%A Burdall O
%A Bohr C
%A Kennard H
%A Lewis S
%A Harris L
%A Cusick E
%A  
%J Pediatr Surg Int
%V 40
%N 1
%D 2024 Jul 15
%M 39008127
%F 2.003
%R 10.1007/s00383-024-05756-3
%X <B>OBJECTIVE: </B>Adequate preoperative information is known to improve patient outcomes. We aimed to evaluate perioperative education for paediatric patients and families undergoing intestinal stoma formation.<BR><B>METHODS: </B>UK paediatric surgery centres were invited to recruit patients aged 6-16 years with a stoma in situ or reversed within the last 2 years. Patient and parent questionnaires were posted for potential participants.<BR><B>RESULTS: </B>Eighty-three patient/parent dyads returned questionnaires. Median age was 11.5 years (range 4.1-17.8), with 48% (n = 40) formed electively. Parents rated how well-informed they felt perioperatively out of 10 (0 poorly, 10 highly informed). Parents were better informed about surgical issues and stoma care than psychological and social impacts (7.45 vs 6.11; p < 0.0001). 54% reported surgical complications but significantly fewer patients listed these amongst the worst things about having a stoma (24.4%) when compared with psychosocial issues: distress from bag leaks (90.8%; p < 0.0001), self-consciousness (54.1%; p = 0.0001), and restricted activity (40.2%; p = 0.03).<BR><B>CONCLUSIONS: </B>Parents felt well-informed for medical and practical aspects but less well-informed of psychological and lifestyle impacts of having a stoma. Surgical complications were less important to patients than the impact on daily life. Increased psychosocial information would enable families to be better prepared for life with a stoma.