Long-term distress throughout one's life: health-related quality of life, economic and caregiver burden of patients with neurofibromatosis type 1 in China

• Main Authors: Wanxian Liang (Author), Shihuan Cao (Author), Yusi Suo (Author), Lining Zhang (Author), Lujia Yang (Author), Ping Wang (Author), Hanfei Wang (Author), Han Wang (Author), Guannan Bai (Author), Qingnan Li (Author), Jiayin Zheng (Author), Xuejing Jin (Author)
• Formato: Livro
• Publicado em: Frontiers Media S.A., 2024-08-01T00:00:00Z.
• Assuntos: article
• Acesso em linha: Connect to this object online.

IntroductionNeurofibromatosis type 1 (NF1) is a rare genetic disorder, with lack of evidence of disease burden in China. We aimed to describe the economic burden, health-related quality of life (HRQL), and caregiver burden of NF1 patients in China.MethodsWe conducted an online cross-sectional survey...