神经纤维瘤病1型青少年和年轻成人过渡准备评估

数据集获取（Figshare）

• 源站标题：Transition Readiness Assessment in Adolescents and Young Adults with Neurofibromatosis Type 1 (NF1)
• DOI：10.6084/m9.figshare.12999546.v1
• 发布日期：2020-09-24
• 文件数：2 个
• 文件总体积：242.81 KB
• 源站页面：https://tandf.figshare.com/articles/dataset/Transition_Readiness_Assessment_in_Adolescents_and_Young_Adults_with_Neurofibromatosis_Type_1_NF1_/12999546

命令行下载

curl -L -o "icpn_a_1806402_sm1219.docx" "https://ndownloader.figshare.com/files/24771537"
curl -L -o "icpn_a_1806402_sm1218.pdf" "https://ndownloader.figshare.com/files/24771540"

文件清单

• icpn_a_1806402_sm1219.docx（17.80 KB）
• icpn_a_1806402_sm1218.pdf（225.02 KB）

文件总体积 242.81 KB（源站 API 实测）。

数据说明

Neurofibromatosis type 1 (NF1) conveys significant disease morbidity and lower quality of life compared to the general population. Research has shown that decreased positive health outcomes are directly correlated with inadequate development of health-related self-management skills among similar patient populations, and among these populations a healthcare transition (HCT) intervention improves provision of care and health outcomes. Thus, HCT intervention may improve care and outcomes in NF1. To design a future informed NF1 HCT intervention, baseline transition readiness must be assessed. A survey distributed by Children’s Tumor Foundation (CTF) was developed to assess transition readiness and the impact of NF1 on factors of young adult life. A total of 101 participants aged 14–26 years living in the United States completed the survey with a median [IQR] age of 18 [16, 21]. The majority of participants reported that NF1 had significant or some impact on all factors of young adult life including education, career, relationships, and family planning. The median Transition Readiness Assessment Questionnaire (TRAQ) score in this study (3.50/5.00) was significantly lower than the previously published score of healthy peers (3.93/5.00) (pr = 0.632). Participants self-report adequate knowledge of NF1 and comfort in talking to medical providers. They report discomfort with appointment keeping, insurance related tasks, addressing NF1 emergencies, and discussing NF1 with non-medical providers and peers. Further, TRAQ and NF1-TRAQ scores were lower in individuals who reported that their diagnosis of NF1 had some or significant impact on education, career, and relationships. Findings demonstrate that among individuals with NF1 in this study, decreased transition readiness is associated with a negative impact on young adult life. Data from this study supports the need to develop NF1-specific HCT intervention tools, with an effort to improve quality of life and standardize NF1 care.

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.6084/m9.figshare.12999546.v1（source: https://tandf.figshare.com/articles/dataset/Transition_Readiness_Assessment_in_Adolescents_and_Young_Adults_with_Neurofibromatosis_Type_1_NF1_/12999546）。