神经纤维瘤(NF)是一组罕见的,遗传性疾病具有发展多个良性神经系统肿瘤的倾向。鉴于广泛的NF症状和涉及NF护理的医学专业,我们试图评估人们的意识水平,并同意,在美国NF专家中发表NF临床指南。
匿名者,横截面,在线调查分发给美国的NF临床医生。受访者自我报告的人口统计数据,实践特点,对七个NF指南出版物的认识,并使用5点Likert量表与多达40个个人建议达成一致。我们计算了每位临床医生评定为“强烈同意”的建议比例,并根据受访者特征评估指南意识和一致性的差异。
8个医学专业的63名临床医生(女性占49%;学术实践占80%)完成了调查。每个指南出版物的知晓率在53%-79%的受访者之间;专家对其医学专业组织认可的出版物的知晓率更高(p<0.05)。“强烈同意”个人建议的受访者比例为17%-83%;对于16条指南,不到50%的受访者“强烈同意”。与基于临床医生性别的建议的总体一致性没有显著差异,种族,专业,多年的实践,实践类型(学术/私人实践/其他),实习地点(城市/郊区/农村),或参与NF研究(均p>0.05)。
我们发现,并同意,在NF专家中发布NF护理指南。未来的质量改进工作应侧重于循证,共识驱动的方法来更新和传播指南在这个多专业的提供者群体。还应咨询患者和护理人员,以积极预测获得和实施指南驱动护理的障碍。这些改善指南知识和采用的建议对于需要多专业护理协调的其他罕见疾病也可能有用。
The neurofibromatoses (NF) are a group of rare, genetic diseases sharing a predisposition to develop multiple benign nervous system tumors. Given the wide range of NF symptoms and medical specialties involved in NF care, we sought to evaluate the level of awareness of, and agreement with, published NF clinical
guidelines among NF specialists in the United States.
An anonymous, cross-sectional, online survey was distributed to U.S.-based NF clinicians. Respondents self-reported demographics, practice characteristics, awareness of seven NF guideline publications, and level of agreement with up to 40 individual recommendations using a 5-point Likert scale. We calculated the proportion of recommendations that each clinician rated \"strongly agree\", and assessed for differences in guideline awareness and agreement by respondent characteristics.
Sixty-three clinicians (49% female; 80% academic practice) across > 8 medical specialties completed the survey. Awareness of each guideline publication ranged from 53%-79% of respondents; specialists had higher awareness of publications endorsed by their medical professional organization (p < 0.05). The proportion of respondents who \"strongly agree\" with individual recommendations ranged from 17%-83%; for 16
guidelines, less than 50% of respondents \"strongly agree\". There were no significant differences in overall agreement with recommendations based on clinicians\' gender, race, specialty, years in practice, practice type (academic/private practice/other), practice location (urban/suburban/rural), or involvement in NF research (p > 0.05 for all).
We identified wide variability in both awareness of, and agreement with, published NF care
guidelines among NF experts. Future quality improvement efforts should focus on evidence-based,
consensus-driven methods to update and disseminate
guidelines across this multi-specialty group of providers. Patients and caregivers should also be consulted to proactively anticipate barriers to accessing and implementing guideline-driven care. These recommendations for improving guideline knowledge and adoption may also be useful for other rare diseases requiring multi-specialty care coordination.