Idiopathic pulmonary fibrosis (IPF) is characterised by increasing severity of symptoms, including dyspnoea, cough and fatigue, functional decline and poor prognosis with a median untreated survival of 3 years from diagnosis [1]. Traditionally, IPF research and clinical management have involved objective assessments including pulmonary function tests, high-resolution computed tomography scans as well as morbidity (e.g. exacerbations, hospitalisation) and mortality endpoints. However, these measures may not capture aspects of the disease important to people living with IPF, such as symptoms and quality of life, which can be measured using patient-reported outcome measures (PROMs) [2]. In IPF, a rapidly progressive disease with a large symptom burden, the use of validated and standardised PROMs is particularly relevant, as they can highlight the impact of the disease on the person which enables consideration of their perspectives, individualised care and, in clinical trials, capture treatment effects not detected by other outcome measures [3].

特发性肺纤维化 (IPF) 的特征是症状的严重程度不断增加，包括呼吸困难、咳嗽和疲劳、功能下降和预后不良，诊断后未经治疗的中位生存期为 3 年 [1]。传统上，IPF 研究和临床管理涉及客观评估，包括肺功能测试、高分辨率计算机断层扫描以及发病率（例如恶化、住院）和死亡率终点。然而，这些措施可能无法捕捉到对 IPF 患者重要的疾病方面，例如症状和生活质量，这可以使用患者报告的结果测量 (PROM) [2] 来衡量。在 IPF 是一种症状负担很大的快速进展性疾病，使用经过验证和标准化的 PROM 特别相关，因为它们可以突出疾病对人的影响，从而能够考虑他们的观点、个性化护理以及在临床试验中，捕获其他结果测量未检测到的治疗效果 [3]。