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 (ß 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.
ABSTRACT
OBJECTIVE: To improve the predictive ability of diuretic renography (DR) for surgical intervention in children with congenital hydronephrosis (CH) and concern for ureteropelvic junction obstruction. METHODS: Children with CH born between 2007 and 2021 who underwent initial DR prior to 6months of life, had both clearance while upright (CUP) and T ½ reported, and did not have immediate surgical intervention after the first DR were retrospectively evaluated for surgical intervention during the period of clinical observation. Once the optimal cut-points were identified for CUP and T ½, they were used to calculate the sensitivity, specificity, positive predictive value, and negative predictive value. RESULTS: In total 65 patients were included in the final analysis with 33 (50.8%) undergoing surgical intervention (pyeloplasty) and 32 (49.2%) still on observation at last follow-up. The optimal cut-points for predicting surgical intervention were 28.1 minutes for T ½ and 22.4% for CUP. Applying the CUP cut-point of 22.4% we achieved a sensitivity of 60.6% (95% CI: 43.9-77.3), specificity of 96.9% (95% CI: 90.1-100.0), positive predictive value of 95.2% (95% CI: 86.1-100.0), and negative predictive value of 70.5% (95% CI: 57.0-83.9). CONCLUSION: A low CUP accurately predicts surgical intervention in children with CH who are initially observed. Although there is no singular measure on DR that can with absolute certainty predict future clinical course, our data do suggest there is utility in incorporating CUP (if <22.4%) into the decision process. Further research is necessary to help guide the management of children with intermediate CUP values.
