BACKGROUND: Children with disabilities receiving long-term enteral nutrition (EN) frequently struggle with feeding issues. This study aims to develop and validate a questionnaire to assess tube feeding challenges and nutritional problems among this group of children. METHODS: In this survey-based study, data was collected via an online survey of mothers or caregivers of children with disabilities receiving long-term EN. The questionnaire was prepared following a literature analysis of nasogastric, gastrostomy and jejunostomy-related complications in children. The validation of the tool was conducted with three experts in the field, followed by its translation into Arabic. It was then pilot-tested on six mothers of children with disabilities who receive long-term EN. The reliability of the questionnaire was assessed using Cronbach's-alpha coefficient and measurement of test-retest inter-rater reliability. RESULTS: Twenty-four children were included in this study
their median age was 4.7 years. The value of Cronbach's-alpha (α = 0.742) suggested good reliability of the tool items among the study sample. The test-retest reliability assessed by correlation coefficients showed a strong correlation for most items
the r-value of the overall tool was 0.922, CONCLUSION: Strong test-retest reliability was demonstrated by the developed EN feeding problem questionnaire. Suggesting that the questionnaire is reliable and valid for utilisation in children with disabilities.