Social Independence of Patients with Neurofibromatosis Type 2 in Japan: Analysis of a National Registry of Patients Receiving Medical Expense Subsidies, 2004-2013

Although it is important for patients with neurofibromatosis type 2 (NF2) to live independently and maintain good quality of life (QOL), no study has examined the social independence status in this patient population. This study aimed to examine the state of social independence and its contributing factors in patients with NF2 using data from a national registry in Japan during the past decade. A database provided by the Ministry of Health, Labour and Welfare of Japan that contained information about all patients with newly submitted claims for medical expense subsidies for NF2 in Japan between fiscal years 2004 and 2013 was analyzed. Individuals aged 6 to 64 years were deemed eligible for the present study. Categories of "employed," "studying," and "housekeeping" were classified as "socially independent." Multivariate logistic regression analysis was performed to examine associations between demographic variables, neurological features, and social independence status. Of 334 participants, 79% were socially independent at the time of registration. Socially dependent participants had more neurological features than those who were socially independent, whereas sex, age, and family history had no significant associations with social independence status. Multivariate logistic regression analysis revealed that participants with bilateral hearing loss, unilateral hearing loss, blindness, hemiplegia, or seizures had significantly higher odd ratios for being socially dependent compared to participants without these features. Our findings, which suggest that these neurological features could restrict social independence, could contribute to the maintenance of better social functioning and QOL in patients with NF2.

Keywords: medical expense subsidies; neurofibromatosis type 2; neurological features; patient registry; social independence.