Relapsing polychondritis: state of the art on clinical practice guidelines.
Relapsing polychondritis: state of the art on clinical practice guidelines.
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DOI：
10.1136/rmdopen-2018-000788
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发表时间：
2018
期刊：
影响因子：
6.2
通讯作者：
Arnaud L
中科院分区：
文献类型：
--
作者：
Rednic S;Damian L;Talarico R;Scirè CA;Tobias A;Costedoat-Chalumeau N;Launay D;Mathian A;Mattews L;Ponte C;Toniati P;Bombardieri S;Frank C;Schneider M;Smith V;Cutolo M;Mosca M;Arnaud L
由于复发性多囊炎（RP）的罕见性，许多未满足的需求仍然在RP的管理。在这里，我们对针对RP发布的临床实践指南（CPG）进行了系统回顾，并列出了这种罕见疾病最引人注目的未满足需求清单。我们基于受控术语（医学主题词和Emtree）以及疾病和出版物类型（CPG）的关键词在PubMed和Embase中进行了系统检索。系统性文献综述识别出20篇引文，其中未识别出CPG。我们确定了RP领域11个未满足需求的主要领域：RP的诊断策略; RP的治疗管理; RP的妊娠管理;特定年龄组疾病的管理。（例如，在儿科发作的RP中）;治疗依从性评价; RP患者的随访，包括潜在并发症的筛查频率和每个受累区域的最佳成像工具;围手术期和麻醉管理（由于气管受累）; RP中肿瘤的风险，包括血液学恶性肿瘤;感染的预防和管理;评估疾病活动和损害的工具;以及患者报告的结局和生活质量指标。患者和医生应在ReCONNET网络的框架内共同努力，以获得有价值的证据，获得文献知情的CPG。
Due to the rarity of relapsing polychondritis (RP), many unmet needs remain in the management of RP. Here, we present a systematic review of clinical practice guidelines (CPGs) published for RP, as well as a list of the most striking unmet needs for this rare disease. We carried out a systematic search in PubMed and Embase based on controlled terms (medical subject headings and Emtree) and keywords of the disease and publication type (CPGs). The systematic literature review identified 20 citations, among which no CPGs could be identified. We identified 11 main areas with unmet needs in the field of RP: the diagnosis strategy for RP; the therapeutic management of RP; the management of pregnancy in RP; the management of the disease in specific age groups (for instance in paediatric-onset RP); the evaluation of adherence to treatment; the follow-up of patients with RP, including the frequency of screening for the potential complications and the optimal imaging tools for each involved region; perioperative and anaesthetic management (due to tracheal involvement); risk of neoplasms in RP, including haematological malignancies; the prevention and management of infections; tools for assessment of disease activity and damage; and patient-reported outcomes and quality of life indicators. Patients and physicians should work together within the frame of the ReCONNET network to derive valuable evidence for obtaining literature-informed CPGs.
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影响因子：
4.5
作者：
Jeon CH
通讯作者：
Jeon CH
影响因子：
4.7
作者：
Ferrada, Marcela A.;Grayson, Peter C.;Katz, James D.
通讯作者：
Katz, James D.
影响因子：
5.1
作者：
Kent, Peter D.;Michet, Clement J., Jr.;Luthra, Harvinder S.
通讯作者：
Luthra, Harvinder S.
DOI：
10.1186/s12348-017-0124-5
发表时间：
2017-02-15
影响因子：
2.9
作者：
Bin Ismail, Muhammad Amir;Lim, Rachel Hui Fen;Agrawal, Rupesh
通讯作者：
Agrawal, Rupesh
影响因子：
2.9
作者：
Kim, In Ki;Kim, Min Soo;Shin, Yang-Sik
通讯作者：
Shin, Yang-Sik