Adults with cystic fibrosis report important and unmet needs for disease information
Adults with cystic fibrosis report important and unmet needs for disease information
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DOI：
10.1016/j.jcf.2007.03.004
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发表时间：
2007-11-30
影响因子：
5.2
通讯作者：
Robinson, Walter
中科院分区：
文献类型：
--
作者：
Sawicki, Gregory S.;Sellers, Deborah E.;Robinson, Walter
背景：之前尚未评估过不断增长的囊性纤维化 (CF) 成年人的信息需求。方法：参加 CF 成人护理项目 (PAC-CF) 的 CF 成年人完成了一项调查，其中包括 22 个项目，其中信息主题根据接收更多信息的重要性以及对信息来源的满意度进行了评级。未满足的需求被定义为那些对信息源的重要性和满意度都被评为高的主题。 结果：233 名受访者的中位年龄为 34 岁，FEV1 中位预测值为 68%，其中 59% 为女性。平均重要性评级最高的信息主题是 CF 治疗和感染管理。认为个人信息需求未得到满足的受访者比例为 2-32%。近三分之一的受访者报告称，有关“应对能量下降的方法”、“新的 CF 疗法”和“应对未来不可预测性的方法”的信息未得到满足。除了四个评估的信息主题外，临床和社会人口因素与报告未满足信息需求的可能性增加没有显着相关。结论：患有 CF 的成年人将治疗主题的信息视为最重要。相比之下，患者更有可能报告有关疾病自我管理和未来规划的信息需求未得到满足。临床和社会人口学患者特征与未满足的信息需求没有系统关联。治疗成人囊性纤维化患者的临床医生不应仅仅依赖社会人口学因素或疾病严重程度的标志来提供有关疾病自我管理和未来规划的综合信息。 (c) 2007 年欧洲囊性纤维化协会出版，由 Elsevier B.V. 保留所有权利。
Background: The informational needs of the growing population of adults with cystic fibrosis (CF) have not been previously assessed.Methods: Adults with CF enrolled in the Project on Adult Care in CF (PAC-CF) completed a survey including 22 items in which information topics were rated on the importance of receiving more information and the satisfaction with sources of information. Unmet needs were defined as those topics rated with both high importance and low satisfaction with information sources.Results: The median age of the 233 respondents was 34 years, median FEV1 was 68% predicted, and 59% were female. The information topics with the highest mean importance ratings were on CF treatments and managing infection. The percentage of respondents rating an individual information need as unmet ranged from 2-32%. Information on "ways to deal with decreased energy, "new CF therapies," and "ways to deal with the unpredictability of the future" ware reported as unmet by almost one-third of respondents. For all but four of the information topics assessed, clinical and socio-demographic factors were not significantly associated with increased likelihood of reporting unmet informational needs.Conclusions: Adults with CF rated information on treatment topics as most important. In contrast, patients were more likely to report information needs on disease self-management and future planning as unmet. Clinical and socio-demographic patient characteristics were not systematically associated with unmet informational needs. Clinicians caring for adult CF patients should not solely rely socio-demographic factors or markers of disease severity as signals for providing comprehensive information on disease self-management and future planning. (c) 2007 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.