A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network.
A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network.
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DOI：
10.1186/s13023-017-0623-3
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发表时间：
2017-04-17
影响因子：
3.7
通讯作者：
Shashi V
中科院分区：
文献类型：
--
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
患者关于自己疾病的故事有助于弥合患者和提供者之间的鸿沟，促进更人性化的医疗护理。疾病叙事分为三种类型：恢复(康复的期望)、混乱(痛苦和损失)和追求(疾病带来的意想不到的积极影响)。未诊断的患者有独特的疾病经历，获得他们的叙述将提供对与未诊断的疾病生活在一起的医疗和情感影响的洞察。患有未诊断疾病的成人和儿童申请接受未诊断疾病网络(UDN)的评估。本文分析了40名UDN申请者的书面疾病叙述，其中包括20名申请自己的成年先证者和20名申请子女的父母。叙述内容：可以分为三个主题：1)对UDN的期望：大多数人认为他们没有进一步的医疗选择，希望UDN能为他们提供诊断，成年人希望恢复以前的健康生活，父母希望获得信息来管理他们孩子的医疗保健。2)个人医疗信息：叙述报告了症状的恶化，并对他们的疾病原因提出了一些意见。先证者叙述的客观发现很少，而父母叙述有详细的客观信息。3)与未确诊的疾病生活相关的经历：表达了对未确诊的挫折感。鉴于缺乏客观的发现，成年人认为他们必须向提供者提供他们的症状的验证。家长们担心，与孩子管理相关的一些事情被忽视了。叙事类型：所有的叙事都是混乱的类型，但原因不同，先驱描述了损失和痛苦，父母表达了对孩子未来的恐惧。父母的叙述也包含了恢复和追求的元素，接受了“新的常态”，并强调了先驱们所没有的孩子疾病的积极方面。这些叙述说明了与未被诊断共存的混乱。先证者和父母叙述的差异表明，这两个群体在评估和管理时有不同的需求。
Patients’ stories of their illnesses help bridge the divide between patients and providers, facilitating more humane medical care. Illness narratives have been classified into three types: restitution (expectation of recovery), chaos (suffering and loss), and quest (unexpected positive effect from illness). Undiagnosed patients have unique illness experiences and obtaining their narratives would provide insights into the medical and emotional impact of living with an undiagnosed illness. Adults and children with undiagnosed diseases apply to be evaluated by the Undiagnosed Diseases Network (UDN). Written illness narratives from 40 UDN applicants, including 20 adult probands who applied for themselves and 20 parents who applied for their children, were analyzed for: 1) narrative content and 2) narrative type. Narrative content: could be grouped into three themes: 1) Expectations of the UDN: the majority felt they had no further healthcare options and hoped the UDN would provide them with a diagnosis, with the adults expecting to return to their previously healthy life and the parents wanting information to manage their child’s healthcare. 2) Personal medical information: the narratives reported worsening of symptoms and some offered opinions regarding the cause of their illness. The proband narratives had few objective findings, while parental narratives had detailed objective information. 3) Experiences related to living with their undiagnosed illness: frustration at being undiagnosed was expressed. The adults felt they had to provide validation of their symptoms to providers, given the lack of objective findings. The parents worried that something relevant to their child’s management was being overlooked. Narrative type: All the narratives were of the chaos type, but for different reasons, with the probands describing loss and suffering and the parents expressing fear for their child’s future. The parental narratives also had elements of restitution and quest, with acceptance of “a new normal”, and an emphasis on the positive aspects of their child’s illness which was absent from the probands. These narratives illustrate the chaos that coexists with being undiagnosed. The differences between the proband and parental narratives suggest that these two groups have different needs that need to be considered during their evaluation and management.