Are we informing our patients correctly? Evaluation of perioperative counselling for paediatric intestinal stoma formation: a national study
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In brief
In brief
This UK national study of 83 pediatric stoma patients reveals a gap in preoperative counseling: while parents felt well-informed about surgical and practical aspects, they received inadequate preparation for psychosocial impacts. Children identified daily-life challenges like bag leaks and self-consciousness as more distressing than surgical complications, highlighting the need for enhanced lifestyle and psychological counseling.
- Parents felt well-informed about surgical/stoma care aspects but poorly informed about psychological and social impacts of pediatric stomas.
- Patients rated psychosocial issues (bag leaks, self-consciousness, activity restrictions) as worse than surgical complications.
- 54% experienced surgical complications, but only 24% listed these among worst aspects versus 91% citing distress from bag leaks.
- Preoperative counseling should emphasize lifestyle impacts and psychosocial preparation, not just technical stoma management.
- Gap exists between what clinicians prioritize in counseling versus what matters most to pediatric patients living with stomas.
Written by the GCMD Library team from the article.
Abstract
Purpose
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).
Conclusion
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.