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首页> 外文会议>IEEE International Conference on Healthcare Informatics >The Validity and Reliability of Social Networks as a Source for Idiopathic Pulmonary Fibrosis Patient-Reported Outcomes
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The Validity and Reliability of Social Networks as a Source for Idiopathic Pulmonary Fibrosis Patient-Reported Outcomes

机译：社会网络作为特发性肺纤维化患者报告结果的来源的有效性和可靠性

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Idiopathic pulmonary fibrosis (IPF) is an interstitial lung disease which affects an estimated five million patients worldwide. Characterized by progressive respiratory failure and a median patient survival time of three to five years, this disease affects 150,000 patients in the United States (US) and results in 40,000 deaths annually. While the US mortality rate for IPF is similar to breast cancer, idiopathic pulmonary fibrosis remains characterized as a rare disease. Lack of awareness and information for lesser known diseases such as IPF can affect factors ranging from proper diagnosis to the advancement of the drug development pipeline. One platform which may improve insight into the patient experience is that of social networks. Even in light of recent privacy concerns, social networks provide a well-known platform for clinicians, patients, and advocates to interact and provide feedback in real-time. Unlike other patient reporting and survey instruments which reach limited populations, social networks remain unique in their ability to reach larger, diverse cohorts. Although many studies have evaluated and characterized different online patient communities, limited efforts have addressed the applicability of social network data for insight into critical quality of life dimensions. This research evaluates the validity and reliability of social network data as it applies to the development of patient-reported outcomes instruments for IPF patients within the United States over a span of ten years.
机译：特发性肺纤维化（IPF）是一种间质性肺疾病，估计全世界范围内有500万患者。该疾病以进行性呼吸衰竭和患者中位生存时间为三至五年为特征，在美国（美国）影响150,000例患者，每年导致40,000例死亡。尽管IPF的美国死亡率与乳腺癌相似，但特发性肺纤维化仍然是一种罕见疾病。对IPF等鲜为人知的疾病缺乏了解和信息会影响从正确诊断到药物开发流程发展的各种因素。可以改善对患者体验的洞察力的一种平台是社交网络。即使考虑到最近的隐私问题，社交网络也为临床医生，患者和倡导者提供了一个众所周知的平台，以进行交互并实时提供反馈。与其他人群有限的患者报告和调查工具不同，社交网络在覆盖更大，不同人群方面的能力仍然保持独特。尽管许多研究已经评估并描述了不同的在线患者社区的特征，但是有限的努力已经解决了社交网络数据对了解关键生活质量维度的适用性。这项研究评估了社交网络数据的有效性和可靠性，因为该数据适用于在十年内为美国境内IPF患者开发的患者报告结局工具。

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