Saketkoo Lesley Ann, Escorpizo Reuben, Varga Janos, Keen Kevin John, Fligelstone Kim, Birring Surinder S, Alexanderson Helene, Pettersson Henrik, Chaudhry Humza Ahmad, Poole Janet L, Regardt Malin, LeSage Daphne, Sarver Catherine, Lanario Joseph, Renzoni Elisabetta, Scholand Mary Beth, Lammi Matthew R, Kowal-Bielecka Otylia, Distler Oliver, Frech Tracy, Shapiro Lee, Varju Cecilia, Volkmann Elizabeth R, Bernstein Elana J, Drent Marjolein, Obi Ogugua Ndili, Patterson Karen C, Russell Anne-Marie
New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans, LA, United States.
University Medical Center-Comprehensive Pulmonary Hypertension Center & Interstitial Lung Disease Clinic Programs, New Orleans, LA, United States.
Front Pharmacol. 2022 Oct 14;13:979788. doi: 10.3389/fphar.2022.979788. eCollection 2022.
The World Health Organization (WHO) introduced the International Classification of Functioning, Disability, and Health (ICF) as a scientific method of disability data collection comprised of >1,200 categories describing the spectrum of impairment types (functional, symptoms-based and anatomical) under the bio-psycho-social model with consideration of and (pf). ICF Core Sets and ICF Checklists are streamlined disease-specific resources for clinical use, service provision, and for use in health economics and health policy. ICF can disclose strengths and weaknesses across multiple patient-reported outcome measures (PROMs) and help consolidate best-fitting question-items from multiple PROMs. Interstitial lung diseases (ILDs), are generally progressive, with restrictive physiology sometimes occurring in the context of multi-organ autoimmunity/inflammatory conditions such as connective tissue diseases (CTDs). In spite of significant associated morbidity and potential disability, ILD has yet to be linked to the ICF. Each instrument and their question-items within the consensus-recommended core sets for clinical trials in ILD were deconstructed to single concept units, and then linked per updated ICF linkage rules. Inter-linker agreement was established. Three additional subsequently validated measures were also included. One-hundred-eleven ICF categories were identified for ten PROMs and three traditional objective measures that were amenable to ICF linkage. The proportion of agreement ranged from 0.79 (95% CI: 0.62, 0.91) to 0.93 (0.76, 0.99) with the overall proportion of inter-linker agreement being very high 0.86 (0.82, 0.89) for the initial instruments, with 94-100% for the three additional PROMs. Thirty-four new 'Personal Factors' emerged to capture disease-specific qualities not elsewhere described in ICF, e.g. 'pf_embarrassed by cough' or 'pf_panic/afraid when can't get a breath'. This first known effort in ICF linkage of ILD has provided important revelations on the current utility of the ICF in lung disease. Results have indicated areas for meaningful assessment of ICF descriptors for lung impairment. The mapping across PROMs provides insight into possibilities of developing more streamline and precise instrumentation. Finally, familiarity with the ICF in ILD may enable clinicians to experience a smoother transition with the imminent harmonization of ICD and ICF, ICD-11.
世界卫生组织（WHO）引入了《国际功能、残疾和健康分类》（ICF），作为一种残疾数据收集的科学方法，它由1200多个类别组成，描述了生物心理社会模型下的损伤类型谱（功能、基于症状和解剖学），并考虑了 和 （pf）。ICF核心集和ICF清单是针对临床使用、服务提供以及卫生经济学和卫生政策使用的简化的特定疾病资源。ICF可以揭示多种患者报告结局测量（PROMs）的优势和劣势，并有助于整合来自多个PROMs的最合适的问题项。间质性肺疾病（ILDs）通常呈进行性发展，有时在多器官自身免疫/炎症性疾病（如结缔组织病（CTDs））的背景下会出现限制性生理状况。尽管ILD有显著的相关发病率和潜在残疾，但ILD尚未与ICF相关联。将ILD临床试验共识推荐核心集中的每个工具及其问题项解构为单个概念单元，然后根据更新后的ICF链接规则进行链接。建立了链接器一致性。还纳入了另外三项随后经过验证的测量方法。针对10项PROMs和三项适合ICF链接的传统客观测量方法，确定了111个ICF类别。一致性比例范围为0.79（95%CI：0.62，0.91）至0.93（0.76，0.99），初始工具的链接器总体一致性比例非常高，为0.86（0.82，0.89），另外三项PROMs的一致性比例为94 - 100%。出现了34个新的“个人因素”，以捕捉ICF中未在其他地方描述的疾病特异性特征，例如“因咳嗽而尴尬”或“无法呼吸时恐慌/害怕”。在ILD的ICF链接方面的这一首次已知努力，为ICF在肺病中的当前效用提供了重要启示。结果表明了对ICF描述符进行有意义的肺部损伤评估的领域。跨PROMs的映射提供了对开发更简化和精确仪器可能性的见解。最后，熟悉ILD中的ICF可能使临床医生在即将到来的ICD和ICF（ICD - 11）协调中实现更平稳的过渡。
