{Reference Type}: Journal Article {Title}: Are we informing our patients correctly? Evaluation of perioperative counselling for paediatric intestinal stoma formation: a national study. {Author}: Roberts R;Burdall O;Bohr C;Kennard H;Lewis S;Harris L;Cusick E; ; {Journal}: Pediatr Surg Int {Volume}: 40 {Issue}: 1 {Year}: 2024 Jul 15 {Factor}: 2.003 {DOI}: 10.1007/s00383-024-05756-3 {Abstract}: OBJECTIVE: Adequate preoperative information is known to improve patient outcomes. We aimed to evaluate perioperative education for paediatric patients and families undergoing intestinal stoma formation.
METHODS: 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.
RESULTS: 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).
CONCLUSIONS: 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.