Characteristics of undiagnosed diseases network applicants: implications for referring providers.
Characteristics of undiagnosed diseases network applicants: implications for referring providers.
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DOI：
10.1186/s12913-018-3458-2
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发表时间：
2018-08-22
影响因子：
2.8
通讯作者：
Shashi V
中科院分区：
文献类型：
--
作者：
Walley NM;Pena LDM;Hooper SR;Cope H;Jiang YH;McConkie-Rosell A;Sanders C;Schoch K;Spillmann RC;Strong K;McCray AT;Mazur P;Esteves C;LeBlanc K;Undiagnosed Diseases Network;Wise AL;Shashi V
大多数未确诊的疾病都有客观的发现，需要进一步调查。未诊断疾病网络（UDN）接收来自症状和体征难以诊断的患者的申请;然而，许多UDN申请人主要受到疼痛和疲劳等主观症状的影响。我们试图描述UDN申请者的症状、转诊来源和人口统计学因素，以确定可能决定申请结果的因素，并可能区分患有未诊断疾病（具有更客观的发现）和不太可能患有未诊断疾病（更主观的症状）的人。我们对151个连续的未接受和50个随机选择的接受的UDN应用程序进行了系统回顾性分析。主要结果是申请人是否被接受，或不接受，如果接受，是否作出诊断。客观和主观的症状和信息，以前的专业咨询，从供应商的推荐信收集。从UDN在线门户网站收集了关于网络接受度的人口统计数据和决策数据。在未接受的申请中，客观发现较少，主观症状较多。不接受的转诊也来自老年人，报告的疾病时间较短，并由他们的初级保健医生转诊到UDN。与受理申请相比，所有这些差异均达到统计学显著性。两组在应用UDN之前为诊断目的进行亚专业咨询的频率相似。在未被接受的申请中，主观调查结果的优势和客观调查结果的缺乏将这些申请与通过UDN接受评估和诊断工作的申请区分开来。不接受的申请人在多次专家咨询未能给出答案后，主要由其初级保健提供者转介。区分具有客观结果的未确诊疾病患者和具有主要主观结果的患者可以区分哪些患者将受益于进一步诊断过程，哪些患者可能患有功能障碍并需要替代途径来管理其症状。clinicaltrials.gov NCT 02450851，发布于2015年5月21日。本文的在线版本（10.1186/s12913-018-3458-2）包含补充材料，可供授权用户使用。
The majority of undiagnosed diseases manifest with objective findings that warrant further investigation. The Undiagnosed Diseases Network (UDN) receives applications from patients whose symptoms and signs have been intractable to diagnosis; however, many UDN applicants are affected primarily by subjective symptoms such as pain and fatigue. We sought to characterize presenting symptoms, referral sources, and demographic factors of applicants to the UDN to identify factors that may determine application outcome and potentially differentiate between those with undiagnosed diseases (with more objective findings) and those who are less likely to have an undiagnosed disease (more subjective symptoms). We used a systematic retrospective review of 151 consecutive Not Accepted and 50 randomly selected Accepted UDN applications. The primary outcome was whether an applicant was Accepted, or Not Accepted, and, if accepted, whether or not a diagnosis was made. Objective and subjective symptoms and information on prior specialty consultations were collected from provider referral letters. Demographic data and decision data on network acceptance were gathered from the UDN online portal. Fewer objective findings and more subjective symptoms were found in the Not Accepted applications. Not Accepted referrals also were from older individuals, reported a shorter period of illness, and were referred to the UDN by their primary care physicians. All of these differences reached statistical significance in comparison with Accepted applications. The frequency of subspecialty consults for diagnostic purposes prior to UDN application was similar in both groups. The preponderance of subjective and lack of objective findings in the Not Accepted applications distinguish these from applicants that are accepted for evaluation and diagnostic efforts through the UDN. Not Accepted applicants are referred primarily by their primary care providers after multiple specialist consultations fail to yield answers. Distinguishing between patients with undiagnosed diseases with objective findings and those with primarily subjective findings can delineate patients who would benefit from further diagnostic processes from those who may have functional disorders and need alternative pathways for management of their symptoms. clinicaltrials.gov NCT02450851, posted May 21st 2015. The online version of this article (10.1186/s12913-018-3458-2) contains supplementary material, which is available to authorized users.
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影响因子：
3.7
作者：
Spillmann RC;McConkie-Rosell A;Pena L;Jiang YH;Undiagnosed Diseases Network;Schoch K;Walley N;Sanders C;Sullivan J;Hooper SR;Shashi V
通讯作者：
Shashi V
影响因子：
3.3
作者：
Moss-Morris, R;Spence, M
通讯作者：
Spence, M
影响因子：
--
作者：
Crimlisk, HL;Bhatia, K;Ron, MA
通讯作者：
Ron, MA
影响因子：
2.9
作者：
Rasmussen, Erik B.
通讯作者：
Rasmussen, Erik B.
影响因子：
3.9
作者：
Zarovnaya, Elena L.;Pallatroni, Henry F.;Rhodes, C. Harker
通讯作者：
Rhodes, C. Harker