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.
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.
摘要：
目的：已知充分的术前信息可以改善患者的预后。我们旨在评估接受肠造口形成的儿科患者和家庭的围手术期教育。
方法：邀请英国儿科手术中心招募年龄在6-16岁的造口原位或在过去2年内逆转的患者。为潜在参与者发布了患者和父母问卷。
结果：83名患者/父母二分体返回了问卷。中位年龄为11.5岁（范围4.1-17.8），其中48%(n=40)是选择性形成的。父母对他们围手术期的了解程度进行了评分（0较差，10高度知情)。与心理和社会影响相比，父母对手术问题和造口护理的了解更好（7.45vs6.11；p<0.0001）。54％的人报告了手术并发症，但与心理社会问题相比，将造口列为最糟糕的事情（24.4％）的患者要少得多：袋泄漏引起的困扰（90.8％；p<0.0001），自我意识（54.1%；p=0.0001），活动受限（40.2%；p=0.03）。
结论：父母对医学和实践方面了解得很好，但对造口的心理和生活方式影响了解得较少。手术并发症对患者的影响不如对日常生活的影响重要。社会心理信息的增加将使家庭为有气孔的生活做好更好的准备。
方法：邀请英国儿科手术中心招募年龄在6-16岁的造口原位或在过去2年内逆转的患者。为潜在参与者发布了患者和父母问卷。
结果：83名患者/父母二分体返回了问卷。中位年龄为11.5岁（范围4.1-17.8），其中48%(n=40)是选择性形成的。父母对他们围手术期的了解程度进行了评分（0较差，10高度知情)。与心理和社会影响相比，父母对手术问题和造口护理的了解更好（7.45vs6.11；p<0.0001）。54％的人报告了手术并发症，但与心理社会问题相比，将造口列为最糟糕的事情（24.4％）的患者要少得多：袋泄漏引起的困扰（90.8％；p<0.0001），自我意识（54.1%；p=0.0001），活动受限（40.2%；p=0.03）。
结论：父母对医学和实践方面了解得很好，但对造口的心理和生活方式影响了解得较少。手术并发症对患者的影响不如对日常生活的影响重要。社会心理信息的增加将使家庭为有气孔的生活做好更好的准备。
