TRANSLATION, CULTURAL ADAPTATION, AND SEMANTIC VALIDATION OF THE PEDIATRIC NEUROGENIC BOWEL DYSFUNCTION SCORE (NDBS) INTO BRAZILIAN PORTUGUESE AND A PILOT STUDY

DUARTE, Lenamaris Mendes Rocha; SALOMON, Ana Lúcia Ribeiro; REIS, Carmelia Matos Santiago

doi:10.1590/S0004-2803.24612025-034

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ORIGINAL ARTICLE/PEDIATRIC GASTROENTEROLOGY • Arq. Gastroenterol. 62 • 2025 • https://doi.org/10.1590/S0004-2803.24612025-034 linkcopy

TRANSLATION, CULTURAL ADAPTATION, AND SEMANTIC VALIDATION OF THE PEDIATRIC NEUROGENIC BOWEL DYSFUNCTION SCORE (NDBS) INTO BRAZILIAN PORTUGUESE AND A PILOT STUDY

Tradução, adaptação cultural e validação semântica do Neurogenic Bowel Dysfunction Score (NBDS) pediátrico para o português brasileiro e um estudo piloto

Authorship SCIMAGO INSTITUTIONS RANKINGS

ABSTRACT

Objectives: This study aimed to translate the Neurogenic Bowel Dysfunction Score into Brazilian Portuguese, adapting it culturally and validating it semantically.

Methods: The process followed international guidelines for translation, back-translation, cultural adaptation, and semantic validation, involving a committee of specialists and a pre-test with 10 Brazilian pediatric patients with neurogenic bowel dysfunction (mean age: 11 years). Participants were divided into two groups, depending on whether they used transanal irrigation for intestinal management. The translated version was evaluated considering its clarity, equivalence (Likert scale), Kendall’s Coefficient of Concordance, and applicability.

Results: The Brazilian version of the pediatric Neurogenic Bowel Dysfunction Score, presented here, showed high levels of linguistic and cultural equivalence (Kendall greater than 0.8) according to the specialists, after the second round of evaluations. Furthermore, participants understood the questionnaire very well (mean clarity on a Likert scale: 4.7±0.1). The groups were homogeneous for most variables analyzed. The score of Group 1, which used transanal irrigation, was found to be less severe than that of Group 2 (P=0.004). Group 1 showed more satisfaction with their bowel function control than Group 2 (P=0.008).

Conclusion: The initial validation of the pediatric Neurogenic Bowel Dysfunction Score is a step forward in its integration into the national clinical context. The instrument was found to be reliable and viable for use in clinical practice and research, enabling standardized assessments and global comparisons. Its implementation will help ensure efficient neurogenic bowel dysfunction management and improve the health and quality of life of these children and adolescents.

Keywords:
Translating; cultural competency; validation studies; spina bifida; neurogenic bowel; pediatric; quality of life

HIGHLIGHTS

• This study aimed to translate the Neurogenic Bowel Dysfunction Score into Brazilian Portuguese.

• It followed international guidelines for translation, back-translation, cultural adaptation, and semantic validation, involving a committee of specialists and a pre-test.

• The Brazilian version demonstrated high levels of linguistic and cultural equivalence according to specialists, and participants understood the questionnaire very well. Group 1, which used transanal irrigation, had less severe neurogenic bowel dysfunction and reported greater satisfaction with their bowel function control.

• The instrument was found to be reliable and feasible for use in clinical practice for the neurogenic bowel dysfunction management and research, allowing for standardized assessments and global comparisons.

Questions	Equivalence Assessment	Mean Equivalence Likert Scores	Mean Clarity Likert Scores
1, 2, 4, 6, 10, 13, 15	Conceptual	5	5
	Semantic	5
	Linguistic	5
	Experiential	5
3, 12, 14	Conceptual	3	3
	Semantic	3
	Linguistic	4
	Experiential	3
5, 8, 9	Conceptual	4	4
	Semantic	4
	Linguistic	4
	Experiential	4
7	Conceptual	4	4
	Semantic	3
	Linguistic	4
	Experiential	4
11	Conceptual	4	4
	Semantic	3
	Linguistic	4
	Experiential	3

Q	Original content	Issue identified in the preliminary version	Modification Implemented	Mean W (Before)	Mean W (After)
3	*Does a parent or caregiver have to assist you with your regular bowel routine?*	The term “regular bowel routine” was considered too technical and not easily understood for lay caregivers and young children.	Simplified to “rotina intestinal”	0.72	0.85
5	*How controlled do you think your bowels are?*	The expression “bowel control” raised questions about what, exactly, would be evaluated as “control”.	Reworded to “controle sobre o funcionamento do seu intestino”	0.69	0.82
7	*Using the attached descriptions on average what category was your poop most commonly?*	“Category” was considered a technical term.	Reworded to “formato mais comum das suas fezes”	0.73	0.84
8	*How often do you have stool accidents?*	“Stool accidents” was seen as a confusing expression, that would not be familiar to lay caregivers and smaller children.	Reworded to “perda de fezes sem controle”	0.70	0.83
9	*Do you wear a diaper for stool accidents?*	Repeats the term “stool accidents”.	Replaced with “por causa das perdas de fezes”	0.68	0.82
11	*Do you currently have any rashes or cuts on your bottom?*	The term used in the translation was the more technical equivalent of “anal fissure”, which was found to be little familiar to lay caregivers and smaller children.	Replaced with “machucado na região do bumbum”	0.73	0.85
12	*How often does the management of your stool interfere with your recreational, social or family activities?*	The preliminary version used the term ‘bowel management,’ which was unfamiliar to lay caregivers and young children.	Reworded to “o cuidado com suas fezes”	0.71	0.84
14	*How bothersome are your bowel problems to you?*	“Bothersome” was considered too subjective.	Replaced with “o quanto os seus problemas intestinais te incomodam”	0.72	0.85

	GROUP 1 (n=5)	GROUP 2 (n=5)	Fisher’s Exact Test and Mann-Whitney U Test (P-value)
Sex	80% Male	100% Female	0.024
	20% Female
Mean age in months (SD)	148 (±27.7)	113 (±18.1)	0.056
Ethnicity	60% White	20% White	0.167
	20% Black	40% Black
	20% Brown	40% Brown
Degree of kinship of the family caregiver	80% Mother	80% Mother	0.278
	20% Father	20% Aunt
Monthly income in minimum wages	20% up to and including 1	40% up to and including 2	0.171
	40% up to and including 3	20% up to and including 3
	20% up to and including 5	20% up to and including 5
	20% above and including 7	20% above and including 7
Diagnoses	100% Myelomeningocele	100% Myelomeningocele	N/A
	100% NBD	100% NBD
	100% NB	100% NB
Functional classification	20% Sacral	40% Low Lumbar	0.083
	60% Low Lumbar	20% High Lumbar
	20% High Lumbar	40% Thoracolumbar
Mobility	80% Community Walker	20% Community walker	0.079
	20% Non-Walker	20% Restricted walker
		60% Non-Walker
CIBL (Self-Cat)	100% Yes (40% self-cat)	100% Yes	0.222
Urinary incontinence	80% Yes	40% Yes	0.238
	20% No	60% No
VPS	60% Yes	40% Yes	0.397
	40% No	60% No
Third ventricle ostomy	100% No	20% Yes	0.500
		80% No

		GROUP 1 (n=5)	GROUP 2 (n=5)	Gamma*	P
Clarity and comprehension ratings of pediatric NBDS questions (Likert Scale)	1 = Very low	0	0	-0.3	0.513
	2 = Low	0	0
	3 = Medium	0	0
	4 = High	1	2
	5 = Very high	4	3
Pediatric NBDS Score	0 to 9 = Mild NBD	1	0	1	0.004
	10 to 20 = Moderate NBD	4	1
	21 to 41 = Severe NBD	0	4
Satisfaction score for bowel function control	0	0	2	-1	0.008
	1	0	0
	2	0	1
	3	0	1
	4	0	0
	5	0	1
	6	0	0
	7	0	0
	8	1	0
	9	1	0
	10	3	0
Wexner Score	1 to 7 = Mild FI	5	0
	8 to 15= Moderate FI	0	2	1	0.008
	15 to 20 = Severe FI	0	3

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[TFN1] Likert mean: absolute mean on the Likert Scale: 1: very low, 2: low, 3: medium, 4: high, 5: very high.