Evaluation of quality of life in adults with neurofibromatosis 1 (NF1) using the Impact of NF1 on Quality Of Life (INF1-QOL) questionnaire

详细信息    查看全文

• 作者：Rosalie E Ferner ; Mary Thomas ; Gemma Mercer…
• 刊名：Health and Quality of Life Outcomes
• 出版年：2017
• 出版时间：January 2017
• 年：2017
• 卷：15
• 期：1
• 全文大小：413KB
• 刊物主题：Quality of Life Research; Quality of Life Research;
• 出版者：BioMed Central
• ISSN：1477-7525
• 卷排序：15

文摘

BackgroundNeurofibromatosis 1 (NF1) is an inherited, multi-system, tumour suppressor disorder with variable complications that cause psychological distress and social isolation. The study aim was to develop and validate a disease-specific questionnaire to measure quality of life (QOL) in NF1 that is suitable both as an assessment tool in clinical practice and in clinical trials of novel therapy.