Epidemiological analysis of two interstitial cystitis cohorts

项目摘要/摘要 间质性膀胱炎/膀胱痛综合征(IC/BPS)是一种多因素的慢性综合征，累及尿路 频率、尿急和膀胱不适(1)，估计在美国有1000万患者 美国(2)。尽管对IC/BPS病理生理学的了解仍然有限，但已发表的研究 已经发现了几种共病，包括外阴疼痛和焦虑的共病在IC/BPS中普遍存在(4，5)。 研究表明，这些合并症反过来会加剧IC/BPS症状，并与 功能、适应、预后和治疗应答率较差。 这项建议中的研究建立在我们之前的分析和多学科的分析基础上 慢性盆腔疼痛的研究方法(MAPP)研究网络。我们的400 IC/BPS队列 波士顿儿童医院的患者已经被跟踪了15年，并提供了不同寻常的 有机会对与IC/BPS并存的各种情况进行流行病学研究。 我们还将通过调查，对IC/BPS患者的大量在线队列进行全面表型 通过“社交倾听”系统分析患者的社交媒体帖子，这可能是 与患者进行三角测量时在识别环境因素方面的方法学优势 影响IC/BPS共病的调查。 这一建议背后的假设是，广泛的表型将阐明 对IC/BPS中的共生疾病进行研究，并揭示在IC/BPS的发展中起作用的因素 精神错乱。基于这一假设，我们的目标是：1)确定疾病在 人口统计学上不同的队列(如焦虑、抑郁、外阴疼痛)和潜在的环境 影响者(例如，家庭不和、贫困、污染)；2)全面而严格地表现出一个子集 使用PROMIS和PhenX工具箱的患者的合并症调查；3) 描述健康差距对IC/BPS的影响，并特别注意健康差距 影响患有IC/BPS的非裔美国人。由于该项目利用现有群体并进行 通过远程医疗进行表型鉴定，这是一种成本效益高的方法，可以更好地表征表型和 阐明IC/BPS的维度表型的结构和流行病学。

PROJECT SUMMARY/ABSTRACT Interstitial cystitis/bladder pain syndrome (IC/BPS) is a multifactorial, chronic syndrome involving urinary frequency, urinary urgency, and bladder discomfort (1) that affects an estimated 10 million patients in the United States(2). Although understandings of IC/BPS pathophysiology remain limited, published studies have found several comorbidities, including vulvodynia and anxiety comorbidities prevalent in IC/BPS (4, 5). Research suggests that these comorbidities, in turn, exacerbate IC/BPS symptoms and are associated with poor functioning, adjustment, prognosis, and treatment response rates. The research within this proposal builds upon our previous analyses and those of the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network. Our cohort of 400 IC/BPS patients at Boston Children's Hospital has been followed for 15 years and provides an extraordinary opportunity for an epidemiological study of the various conditions co-occurring with IC/BPS. We will also comprehensively phenotype a large online cohort of patients with IC/BPS through surveys and systematic analysis of patient social media posts via “social listening”, which could be methodologically advantageous in identifying environmental factors when triangulated with patient surveys influencing IC/BPS comorbidities. The hypothesis underlying this proposal is that extensive phenotyping will elucidate the depth and breadth of co-occurring disorders in IC/BPS and uncover factors that play a role in the development of the disorders. Based on this hypothesis, our aims are to: 1) identify the prevalence of conditions in demographically distinct cohorts (e.g, anxiety, depression, vulvodynia) and potential environmental influencers (e.g., family discord, poverty, pollution); 2) comprehensively and rigorously phenotype a subset of these patients with the use of PROMIS and PhenX toolkit surveys for comorbid conditions; and 3) characterize the impact of health disparities on IC/BPS, with particular attention paid to health disparities affecting African Americans with IC/BPS. As this project leverages existing cohorts and conducts phenotyping via telemedicine, it is a cost-effective approach to better characterizing phenotypes and elucidating the architecture and epidemiology of dimensional phenotypes in IC/BPS.