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

被引：0
作者：
Jahanshahi, Reza [1 ]
Yasaghi, Zahra [2 ]
Mirzaei, Fatemeh [1 ]
Ghasemi, Shohreh [3 ]
Sanagoo, Akram [4 ]
Jouybari, Leila [4 ]
Foji, Samira [5 ]
机构：
[1] Golestan Univ Med Sci, Student Res Comm, Gorgan, Iran
[2] Golestan Univ Med Sci, Sch Nursing & Midwifery, Master Crit Care Nursing, Gorgan, Iran
[3] Augusta Univ, Oral Surg Adjunct Clin Dept, Augusta, GA USA
[4] Golestan Univ Med Sci, Sch Nursing & Midwifery, Gorgan, Iran
[5] Sabzevar Univ Med sci, Sch Nursing & Midwifery, Sabzevar, Iran
来源：
ORPHANET JOURNAL OF RARE DISEASES | 2023年 / 18卷 / 01期
关键词：
Cost of illness; Iran; Psychometrics; Rare diseases; Von Recklinghausen's disease; DISEASE BURDEN; HEALTH-STATUS; VALIDATION; INSTRUMENTS; TYPE-1; SCALE;
D O I：
10.1186/s13023-023-02681-x
中图分类号：
Q3 [遗传学];
学科分类号：
071007 ; 090102 ;
摘要：
BackgroundThe 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.ResultsThe 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 & PLUSMN; 16.12.ConclusionsThe 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.
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