Are we informing our patients correctly? Evaluation of perioperative counselling for paediatric intestinal stoma formation: a national study.

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.