Evaluation and Pilot Testing of a Decision Support Tool for Lung Transplant in People Living with Cystic Fibrosis

项目摘要/摘要 肺移植(LTX)是治疗囊性纤维化终末期肺部疾病的一种选择。 成人CF患者LTX后的中位生存期已增加到10年，但许多患有 Cf死于呼吸衰竭，不考虑LTX作为治疗选项。一个长期的 这项研究的目的是通过赋权来改善对CF患者的护理 患者对LTX的共同决策。拟议的研究是试验性测试和 创新的决策支持工具，整合了CF患者需要做出的信息 关于LTX的明智决定。我们将利用经过验证的结果衡量标准，包括 编制决策决定量表和决策冲突量表，以确定 基于网络的LTX决策支持工具的初步效果。该工具将用于CF 一秒用力呼气量(FEV1)低于预计值50%的患者， CF基金会建议年度讨论LTX的个人。这些病人 可能距离LTX还有十年或更长时间，但寻求有关LTX的信息作为潜在的 未来的治疗选择。我们的研究还将评估LTX的不同使用 不同社会经济地位和健康水平的慢性肾功能衰竭患者的决策支持工具 通过使用网络分析软件分析患者级别的工具使用数据来识字，以便 优化该工具，以便在弱势群体中使用。我们的LTX决策支持工具 整合了关于LTX的最新特定于CF的信息，建议的研究是 有必要确定该工具是否改变了CF患者的有意义的结果。

Project Summary/Abstract Lung transplant (LTx) is an option for treating end-stage lung disease in cystic fibrosis (CF). Median survival after LTx for adults with CF has increased to 10 years, yet many patients with CF die from respiratory failure without considering LTx as a treatment option. A long-term objective of this research is to improve the care of individuals with CF through empowering patients for shared decision making about LTx. The proposed research is pilot testing an innovative decision support tool that incorporates information CF patients need to make informed decisions about LTx. We will utilize validated outcome measures, including the Preparation for Decision Making Scale and the Decisional Conflict Scale, to determine the preliminary efficacy of the web-based LTx decision support tool. The tool will be used for CF patients with a forced expiratory volume in one second (FEV1) less than 50% of predicted, individuals for whom the CF Foundation recommends annual discussion of LTx. These patients may be a decade or more away from LTx, but seek information about LTx as a potential treatment option in the future. Our research will also assess for differential use of the LTx decision support tool among CF patients with varied levels of socioeconomic status and health literacy by analyzing patient-level tool usage data with web analytics software, in order to optimize the tool for use among disadvantaged populations. Our LTx decision support tool incorporates up to date, CF-specific information about LTx and the proposed research is necessary to determine whether the tool changes meaningful outcomes for CF patients.