Development, reliability and validation of a neurogenic bowel dysfunction score in pediatric patients with spina bifida

• Published in: Neurourology and urodynamics Vol. 35; no. 2; pp. 212 - 217
• Main Authors: Kelly, Maryellen S., Hannan, Margaret, Cassidy, Brenda, Hidas, Guy, Selby, Blake, Khoury, Antoine E., McLorie, Gordon
• Format: Journal Article
• Language: English
• Published: United States Blackwell Publishing Ltd 01.02.2016
• Subjects: Activities of Daily Living; Adolescent; Age Factors; Area Under Curve; Case-Control Studies; Child; constipation; Cost of Illness; Defecation; Fecal Incontinence - diagnosis; Fecal Incontinence - etiology; Fecal Incontinence - physiopathology; Fecal Incontinence - psychology; Female; Humans; Male; neurogenic bowel; Neurogenic Bowel - diagnosis; Neurogenic Bowel - etiology; Neurogenic Bowel - physiopathology; Neurogenic Bowel - psychology; Observer Variation; pediatrics; Predictive Value of Tests; Quality of Life; questionnaire; Reproducibility of Results; ROC Curve; scoring system; Spinal Dysraphism - complications; Spinal Dysraphism - diagnosis; Surveys and Questionnaires; constipation; neurogenic bowel; questionnaire; pediatrics; scoring system
• ISSN: 0733-2467; 1520-6777
• DOI: 10.1002/nau.22694

Objective To develop a reliable and valid questionnaire to monitor neurogenic bowel symptoms in children. Patients Thirty‐four children aged 6–18 with neurogenic bowel and their caregivers. Eighteen control patients. Methods An expert panel generated a domain of observables and formative/reflective content. Response options were scaled following Likert‐type items. Key informant interviews revised the measures. A final questionnaire was given to patients twice to calculate intra‐rater reliability using Cohen's Kappa Coefficient (k) and paired t‐test. Blinded interviews were conducted after physical examination and health assessment and questionnaires completed by a nurse to determine construct validity and inter‐rater reliability using k and Spearman's rank‐order correlation. Control patients completed the questionnaire once, their results were used to determine discriminate validity and a receiver operating characteristic (ROC) curve. Results Intra‐rater reliability showed 85% of the questionnaires having k >0.6. Paired t‐test results of t(33) = 1.997, P = 0.054, d = 0.53, confirmed there was not a significant difference between the scores of the two completed questionnaires. Inter‐rater reliability showed 97% of the questionnaires having k >0.6 between the nurse and the patient/caregiver responses. Scores had a strong positive correlation at rs(32) = 0.943, P < 0.0005. Mean score with neurogenic bowel was 15.18(STD ±  5.77) and control group 4.68(STD ± 2.98). ROC analysis showed an area under the curve of 0.9. A score of 8.5 correlated with presence of neurogenic bowel with sensitivity of 94% and specificity of 87%. Conclusion The questionnaire shows positive reliability and validity when used for pediatric neurogenic bowel patients. The questionnaire differentiates between normal and neurogenic patients. Larger studies are necessary to conduct further validation. Neurourol. Urodynam. 35:212–217, 2016. © 2014 Wiley Periodicals, Inc.