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

囊性纤维化患者肺移植决策支持工具的评估和试点测试

• 批准号: 10282282
• 负责人: Kathleen Jessica Ramos
• 金额: $ 7.78万
• 依托单位: UNIVERSITY OF WASHINGTON
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-01 至 2023-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10282282
• 关键词: Address; Adult; Award; Awareness; Benefits and Risks; Caring; Cessation of life; Complex; Computer software; Conflict (Psychology); Couples; Cystic Fibrosis; Data; Decision Aid; Decision Making; Development; Disease; Dose; Enrollment; Ensure; Ethnic Origin; Evaluation; Feedback; Feeling; Focus Groups; Forced expiratory volume function; Foundations; Funding; Future; Guidelines; Hispanics; Individual; Internet; Intervention; Knowledge; Life; Lung Transplantation; Lung diseases; Measures; Medical; Online Systems; Outcome; Outcome Measure; Patient Preferences; Patients; Pharmaceutical Preparations; Physicians; Pilot Projects; Population; Preparation; Pulmonary Cystic Fibrosis; Pulmonary Function Test/Forced Expiratory Volume 1; Qualitative Research; Quality of life; Randomized Clinical Trials; Randomized Controlled Trials; Readiness; Reporting; Research; Respiratory Failure; Risk Factors; Severity of illness; Socioeconomic Status; Surveys; Testing; Therapeutic; Time; Transplant Recipients; United States; United States National Institutes of Health; Universities; Vulnerable Populations; Washington; Work; base; cystic fibrosis patients; design; disadvantaged population; empowered; end stage disease; experience; feasibility testing; health literacy; improved; innovation; interest; low socioeconomic status; novel; personal narratives; post intervention; predictive modeling; pulmonary function; response; shared decision making; support tools; therapy design; tool; usability

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.

项目总结/摘要 肺移植（LTx）是治疗囊性纤维化（CF）终末期肺病的一种选择。 CF成人患者LTx后的中位生存期已增加至10年，但许多患者 CF死于呼吸衰竭，未考虑LTx作为治疗选择。长期 本研究的目的是通过赋权， 患者对LTx的共同决策。拟议的研究是试点测试， 创新的决策支持工具，包含CF患者需要做出的信息， 关于LTx的明智决定。我们将使用经过验证的结果指标，包括 决策准备量表和决策冲突量表，以确定 基于Web的LTx决策支持工具的初步功效。该工具将用于CF 1秒用力呼气量（FEV 1）小于预测值50%的患者， CF基金会建议每年讨论LTx的个人。这些患者 可能距离LTx还有十年或更长的时间，但请寻求有关LTx的信息， 未来的治疗方案。我们的研究还将评估LTx的差异使用 不同社会经济地位和健康水平的CF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， 优化工具，以便在弱势群体中使用。我们的LTx决策支持工具 结合了最新的，CF特定的信息LTx和拟议的研究是 有必要确定该工具是否改变CF患者的有意义的结果。