Tradução, adaptaçâo cultural e validação do escore de disfunçáo intestinal neurogênica (NBDS) para o Português do Brasil em uma população pediáúica com espinha bíÍida

Abstract

Introduction: Neurogenic Bowel Dysfunction (NBD) is a common condition among children and adolescents with spina bifida (SB), significantly affecting their quality of life (QoL) and requiring individualized therapeutic approaches. For clinical assessment, validated instruments are essential to quantify the severity of the condition and monitor treatment outcomes. This study aimed to translate, culturally adapt, and psychometrically validate the Neurogenic Bowel Dysfunction Score (NBDS) into Brazilian version of the NBDS. Methods: This study was conducted in two phases. In the first phase, following international guidelines, the processes of translation, back-translation, cultural adaptation, and semantic validation were carried out with the involvement of experts and a pretest to assess clarity, equivalence, and applicability. In the second phase, a prospective, cross-sectional, descriptive, and analytical study was conducted using a mixed-methods approach. A total of 102 participants with SB and NBD (mean age: 11 years), accompanied by their caregivers, were included between October 1, 2024, and March 30, 2025, at the Neurogenic Bowel Clinic of the Lago Norte unit of the SARAH Network of Rehabilitation Hospitals. Participants completed a clinical and sociodemographic questionnaire, the Brazilian version of the NBDS, the Wexner’s fecal incontinence score, and the QUALAS-C or QUALAS-T scales. Internal reliability was assessed using Cronbach’s alpha; reproducibility was measured using the Intraclass Correlation Coefficient (ICC); and construct validity was evaluated through exploratory and confirmatory factor analyses. Pearson’s correlation was applied to continuous variables, and the Chi-square test to categorical variables. Participants were categorized into two groups based on their use of transanal irrigation (TAI), and comparative analyses were performed. Results: The Brazilian version of the NBDS showed high linguistic and cultural equivalence (W ≥ 0.8) among experts after the second round of evaluation. It showed good internal reliability (α = 0.78) and high reproducibility (ICC = 0.86; 95% CI: 0.81–0.91). Strong correlations were found with Wexner's score (r = 0.88; p <0.001) and excellent diagnostic accuracy (AUC = 0.97). Tests also showed a significant association with the QUALAS-C/T (r = -0,26; p= 0,009) and with self-reported satisfaction regarding bowel functioning (p= 0.021). The sample was predominantly female (57%), and 69% of participants used TAI. Those who used TAI had lower NBD scores (p<0.001). The average time to complete the questionnaire was 4 ± 2 minutes, and 95% of participants reported that the instrument was easy to understand. Conclusions: The results confirm the validity of the Brazilian version of the NBDS, demonstrating good internal consistency, high reproducibility, and both construct and criterion validity. The first phase produced a linguistically and semantically equivalent translation and cultural adaptation for the Brazilian context. In the second phase, the instrument proved to be reliable and sensitive for assessing NBD in children and adolescents with SB, allowing for the identification of different clinical profiles and the monitoring of symptom severity over time. The study also highlighted a positive association between TAI and lower NBD scores, as well as improvements in quality of life.