Abstract：
BACKGROUND: Children with colorectal diseases such as anorectal malformations (ARM), Hirschsprung disease (HD), and functional constipation (FC) undergo bowel management programs (BMPs) to achieve cleanliness. While patient outcomes, such as cleanliness and quality of life, are well understood, patient experience, such as relationships, ability to participate in sports, and independence and self-confidence is less well understood. We aimed to assess the relationship between BMP and patient experience.
METHODS: A cross-sectional survey was administered to 295 patients ≥3 years old with ARM, HD, and FC completing BMP. The survey contains 22 questions regarding patient-reported experience measures (PREMs) and 11 regarding patient-reported outcomes measures (PROMs). Each was graded on a Likert scale, with higher scores meaning better experience. Scores were compared by demographics and clinical characteristics and logistic regression was performed controlling for clinically significant variables. A p-value of ≤0.05 was significant.
RESULTS: There were 205 eligible respondents (69.5%) with a median age of 8.9 years [IQR: 6.1-12.4]. ARM was most common (51.2%) and most achieved cleanliness on BMP (69.3%). There were no differences in experience scores by age, diagnosis, or bowel regimen. Patients that were clean had significantly higher PREM scores (67.7 [IQR: 64.0-83.0] vs. 64.8 [IQR: 55.0-70.1], p = 0.0002) and PROM scores (36.8 [IQR: 33.0-41.0] vs. 34.0 [31.0-38.5], p = 0.005). On regression analysis, cleanliness remained a strongly significant predictor of positive experience scores (β 7.37, SE 1.86, p < 0.0001).
CONCLUSIONS: Achieving cleanliness was associated with positive patient experience of bowel management programs. This finding suggests that achieving cleanliness, regardless of regimen, may allow patients the best functional and experiential outcomes.
METHODS: A cross-sectional survey was administered to 295 patients ≥3 years old with ARM, HD, and FC completing BMP. The survey contains 22 questions regarding patient-reported experience measures (PREMs) and 11 regarding patient-reported outcomes measures (PROMs). Each was graded on a Likert scale, with higher scores meaning better experience. Scores were compared by demographics and clinical characteristics and logistic regression was performed controlling for clinically significant variables. A p-value of ≤0.05 was significant.
RESULTS: There were 205 eligible respondents (69.5%) with a median age of 8.9 years [IQR: 6.1-12.4]. ARM was most common (51.2%) and most achieved cleanliness on BMP (69.3%). There were no differences in experience scores by age, diagnosis, or bowel regimen. Patients that were clean had significantly higher PREM scores (67.7 [IQR: 64.0-83.0] vs. 64.8 [IQR: 55.0-70.1], p = 0.0002) and PROM scores (36.8 [IQR: 33.0-41.0] vs. 34.0 [31.0-38.5], p = 0.005). On regression analysis, cleanliness remained a strongly significant predictor of positive experience scores (β 7.37, SE 1.86, p < 0.0001).
CONCLUSIONS: Achieving cleanliness was associated with positive patient experience of bowel management programs. This finding suggests that achieving cleanliness, regardless of regimen, may allow patients the best functional and experiential outcomes.
摘要：
背景：患有肛门直肠畸形（ARM）等结直肠疾病的儿童，先天性巨结肠病（HD），和功能性便秘（FC）进行肠道管理计划（BMP）以实现清洁。虽然患者的结果，比如清洁度和生活质量，很好理解，患者体验,比如关系，参加体育运动的能力，和独立和自信是不太了解。我们旨在评估BMP与患者体验之间的关系。
方法：对295例≥3岁的ARM患者进行横断面调查，HD,和FC完成BMP。该调查包含22个关于患者报告体验测量（PREM）的问题和11个关于患者报告结果测量（PROM）的问题。每个人都按李克特量表评分，更高的分数意味着更好的体验。通过人口统计学和临床特征比较得分，并控制临床上有意义的变量进行逻辑回归。P值≤0.05是显著的。
结果：有205名合格受访者（69.5％），中位年龄为8.9岁[IQR：6.1-12.4]。ARM最常见（51.2％），并且在BMP上获得的清洁度最高（69.3％）。不同年龄的经验分数没有差异，诊断,或肠疗法。清洁患者的PREM评分明显较高（67.7[IQR：64.0-83.0]vs.64.8[IQR：55.0-70.1]，p=0.0002）和PROM分数（36.8[IQR：33.0-41.0]vs.34.0[31.0-38.5],p=0.005)。关于回归分析，清洁度仍然是积极经验评分的重要预测因子（β7.37，SE1.86，p<0.0001）。
结论：获得清洁与患者积极的肠道管理经验相关。这一发现表明，实现清洁，不管方案，可以为患者提供最佳的功能和经验结果。
方法：对295例≥3岁的ARM患者进行横断面调查，HD,和FC完成BMP。该调查包含22个关于患者报告体验测量（PREM）的问题和11个关于患者报告结果测量（PROM）的问题。每个人都按李克特量表评分，更高的分数意味着更好的体验。通过人口统计学和临床特征比较得分，并控制临床上有意义的变量进行逻辑回归。P值≤0.05是显著的。
结果：有205名合格受访者（69.5％），中位年龄为8.9岁[IQR：6.1-12.4]。ARM最常见（51.2％），并且在BMP上获得的清洁度最高（69.3％）。不同年龄的经验分数没有差异，诊断,或肠疗法。清洁患者的PREM评分明显较高（67.7[IQR：64.0-83.0]vs.64.8[IQR：55.0-70.1]，p=0.0002）和PROM分数（36.8[IQR：33.0-41.0]vs.34.0[31.0-38.5],p=0.005)。关于回归分析，清洁度仍然是积极经验评分的重要预测因子（β7.37，SE1.86，p<0.0001）。
结论：获得清洁与患者积极的肠道管理经验相关。这一发现表明，实现清洁，不管方案，可以为患者提供最佳的功能和经验结果。
