Burden of adult neurofibromatosis 1 questionnaire: translation and psychometric properties of the Persian version

BACKGROUND: The notion of “burden” has taken a key place in the evaluation of care, particularly in the case of rare diseases. The aim of this study was to evaluate the psychometric properties of the burden of neurofibromatosis 1 questionnaire (BoN) and to determine the perceived disease burden. RESULTS: The 15-item BoN was translated into Persian, and no items were removed based on content validity. The adequacy of the sample was acceptable (KMO = 0.902), and Bartlett’s test of sphericity revealed statistically significant results (P < 0.001). Exploratory factor analysis revealed three factors. The reliability of the scale was good (Cronbach’s alpha: 0.90), and the intraclass coefficient was 0.85. The severity of the burden of neurofibromatosis was moderate, and the total mean burden score was 33.12 ± 16.12. CONCLUSIONS: The Persian version of the BoN is an acceptable tool in terms of structure and content, and it specifically assesses the practical aspects of daily activities for patients with neurofibromatosis.