Introduction Improvements in the treatment of cystic fibrosis (CF) have resulted in longer survival and an increased focus on optimising daily functioning with the condition. Patient-reported outcome measures (PROMs) are valuable tools in evaluating the health-related quality of life of persons with chronic diseases. PROMs may be incorporated into clinical registries to assess and provide feedback regarding the health-related quality of life of the affected population. This study uses qualitative methodology to describe the views of patients with CF, caregivers and clinicians on the usefulness and practicality of incorporating a PROM in the Australian Cystic Fibrosis Data Registry (ACFDR). Methods We conducted semistructured interviews with a convenience sample of patients with CF (n=5), caregivers (n=7) and clinicians (n=13) on their opinions on incorporating the Cystic Fibrosis Questionnaire-Revised or the Cystic Fibrosis Quality of Life Questionnaire into the ACFDR. We analysed data into topics and subtopics using conventional content analysis. Results Participants believed that PROMs could generate useful aggregate health-related quality of life data to support better understanding of the experiences of the modern CF population. Participants emphasised that implementation must be supported by processes to feedback data to patients and clinicians. Most participants preferred electronic PROMs administration for easy integration into existing systems and the potential to support feedback. Conclusion Patients, caregivers and clinicians in this study generally supported the usefulness and practicality of PROM implementation in the ACFDR. Data are available upon reasonable request.

中文翻译：

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囊性纤维化数据注册中患者报告结果测量 (PROM) 的可接受性

简介 囊性纤维化 (CF) 治疗的改进已导致更长的生存期，并且更加注重优化该病症的日常功能。患者报告结果指标 (PROM) 是评估慢性病患者健康相关生活质量的重要工具。PROM 可能会被纳入临床注册，以评估和提供有关受影响人群健康相关生活质量的反馈。本研究使用定性方法来描述 CF 患者、护理人员和临床医生对将 PROM 纳入澳大利亚囊性纤维化数据登记处 (ACFDR) 的有用性和实用性的看法。方法 我们对便利的 CF 患者样本（n=5）进行了半结构化访谈，护理人员（n=7）和临床医生（n=13）关于将囊性纤维化问卷修订版或囊性纤维化生活质量问卷纳入 ACFDR 的意见。我们使用传统的内容分析将数据分析为主题和子主题。结果 参与者认为 PROM 可以生成有用的综合健康相关生活质量数据，以支持更好地理解现代 CF 人群的经历。参与者强调，实施必须得到向患者和临床医生反馈数据的流程的支持。大多数参与者更喜欢电子 PROM 管理，以便轻松集成到现有系统和支持反馈的潜力。结论 患者，本研究中的护理人员和临床医生普遍支持 ACFDR 中 PROM 实施的有用性和实用性。可应合理要求提供数据。