Burden of adult neurofibromatosis 1: Translation, cultural adaption, and psychometric properties of the Iranian version

Abstract Background: The notion of "burden" has taken a key place in the evaluation of care, and particular in the case of rare diseases. The aim of study was to evaluate the psychometric properties of the burden of neurofibromatosis 1 (BoN) questionnaire and the perceived disease burden.Results: BoN with 15 items was translated into Persian and no items were removed from it based on content validity. The adequacy of sample was acceptable (KMO = 0.902), and Bartlett's test of sphericity revealed statistically significant results (P<0.001). Three factors were explored for the questionnaire based on exploratory factor analysis. Reliability of the scale was good (Cronbach’s alpha: 0.90) and Intra-class reliability was 0.85. The severity of burden of neurofibromatosis was moderate and the total mean score of burden was 33.12 ±16.12.Conclusions: The Persian version of BoN is an acceptable tool in terms of structure and content that specifically addresses the practical aspects of daily activities for patients with neurofibromatosis.