Abstract：
OBJECTIVES:The need to include patients' perspectives as key outcomes in clinical trials is widely accepted. No disease-specific patient-reported outcomes have been developed in Takayasu's arteritis. This project was designed to identify outcomes of importance to patients with Takayasu's arteritis during active disease and remission across 2 different cultures. METHODS:Patients with Takayasu's arteritis from the US and Turkey were recruited to participate in semi-structured, one-on-one interviews or focus groups. The interviews and group sessions were recorded, transcribed, and entered into an Nvivo database. A line-by-line review of narrative data was used to develop themes describing the impact of Takayasu's arteritis on patients' life. US Patients were invited to freelist terms that they associated with disease states (active disease and remission). The Smith's Salience Index (SSI) was used to identify the most salient terms. RESULTS:Results. A total of 31 patients with Takayasu's arteritis participated in this study. Interviews and focus groups identified pain, fatigue, and emotional impact as common themes. Outcomes did not differ between the 2 countries. The most salient terms identified through freelisting were pain/discomfort and fatigue/low energy levels (SSI=0.56 and 0.33, respectively) during active disease and pain/discomfort and emotional impact (SSI=0.51 and 0.37, respectively) during remission. CONCLUSIONS:Patients with Takayasu's arteritis report a range of disease-specific symptoms across different cultures and disease states that are generally not specifically captured by generic patient-reported outcome tools currently used in research. Identifying disease-specific outcomes would advance clinical trials methodology to best capture the full spectrum of disease activity in Takayasu's arteritis.
journal_name
Clin Exp Rheumatoljournal_title
Clinical and experimental rheumatologyauthors
Sreih AG,Alibaz-Oner F,Easley E,Davis T,Mumcu G,Milman N,Robson J,Direskeneli H,Merkel PA,Cronholm Psubject
Has Abstractpub_date
2018-03-01 00:00:00pages
51-57issue
2eissn
0392-856Xissn
1593-098Xpii
11854journal_volume
36 Suppl 111pub_type
杂志文章abstract：OBJECTIVES:Transverse myelitis (TM) is an uncommon neurologic condition characterised by the segmental involvement of the spinal cord. Although its etiology is unknown, a well established list of associations have been described, many items of which point towards an autoimmune and vasculitic process. TM is also a rare ...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章,评审
doi：
更新日期：2013-05-01 00:00:00
abstract：OBJECTIVES:Systemic lupus erythematosus (SLE) is a chronic autoimmune multi-organ disease with an unpredictable course. SLE causes functional disability, changes in body appearance, and psychological distress. When faced with SLE, patients have to implement coping strategies. Therefore, the aim of this study was to des...
journal_title：Clinical and experimental rheumatology
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doi：
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journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：1989-03-01 00:00:00
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journal_title：Clinical and experimental rheumatology
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doi：
更新日期：1992-05-01 00:00:00
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journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章,多中心研究
doi：
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journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章,评审
doi：
更新日期：1989-09-01 00:00:00
abstract：OBJECTIVE:To investigate the histological and immunohistochemical properties of the lumbar ligamentum flavum with calcium crystal deposition. METHODS:We examined the histological characteristics of the ligamentum flavum of the lumbar spine containing calcium deposits, obtained from 16 surgical cases with symptomatic l...
journal_title：Clinical and experimental rheumatology
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更新日期：1997-11-01 00:00:00
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journal_title：Clinical and experimental rheumatology
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doi：
更新日期：1995-01-01 00:00:00
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journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章,评审
doi：
更新日期：2011-09-01 00:00:00
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journal_title：Clinical and experimental rheumatology
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doi：
更新日期：2004-05-01 00:00:00
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journal_title：Clinical and experimental rheumatology
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doi：
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journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：1984-01-01 00:00:00
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journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章,评审
doi：
更新日期：2014-01-01 00:00:00
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doi：
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journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：2020-07-01 00:00:00
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journal_title：Clinical and experimental rheumatology
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doi：
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doi：
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pub_type： 杂志文章,meta分析,评审
doi：
更新日期：2016-05-01 00:00:00
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doi：
更新日期：2001-07-01 00:00:00
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doi：
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journal_title：Clinical and experimental rheumatology
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doi：
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doi：
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更新日期：2020-03-01 00:00:00
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journal_title：Clinical and experimental rheumatology
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doi：
更新日期：2013-03-01 00:00:00
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journal_title：Clinical and experimental rheumatology
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doi：
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