Long-term distress throughout one’s life: health-related quality of life, economic and caregiver burden of patients with neurofibromatosis type 1 in China
Both pediatric and adult NF1 patients in China had a wide-ranging economic burden and low HRQL, especially in the psychological dimension. Caregivers for NF1 pediatric patients experienced considerable caregiver burden. More attention and support from policymakers and stakeholders are required to relieve NF1 patients' and caregivers' distress.
Authors
- Xuejing Jin (ORCID: https://orcid.org/0000-0003-3513-2364)
- Hanfei Wang (ORCID: https://orcid.org/0000-0001-5410-9413)
- Qingnan Li
- Guannan Bai (ORCID: https://orcid.org/0000-0003-0619-7580)
- Shihuan Cao
- Jiayin Zheng (ORCID: https://orcid.org/0000-0002-8960-2790)
- Wanxian Liang
- Lining Zhang (ORCID: https://orcid.org/0000-0001-7252-7168)
- Yusi Suo
- Lujia Yang (ORCID: https://orcid.org/0009-0005-7539-1936)
- Han Wang (ORCID: https://orcid.org/0000-0003-4709-2363)
- Ping Wang (ORCID: https://orcid.org/0000-0002-9922-5407)
Institutions
- Beijing University of Chinese Medicine (CN)
- Children's Hospital of Zhejiang University (CN)
Publication Details
- Journal
- Frontiers in Public Health
- Published
- 2024-08-21
- DOI
- https://doi.org/10.3389/fpubh.2024.1398803
- Citations
- 4
- Primary Topic
- Neurofibromatosis and Schwannoma Cases
- Type
- article
- Field-Weighted Citation Impact
- 1.48
Funders
- Beijing University of Chinese Medicine