Epidemiology of Interstitial Cystitis/Painful Bladder

间质性膀胱炎 (IC) 的特点是慢性、衰弱性膀胱疼痛，通常伴有尿频和尿急。由于缺乏明确且广泛接受的病例定义，研究受到阻碍，因此人们对 1C 在人群中的患病率、IC 患者的全部疾病负担、他们寻求的护理类型以及他们接受的治疗类型知之甚少。目前，还没有用于患者筛查或流行病学研究的标准化问卷。 IC信息的缺乏导致难以满足患者的医疗和非医疗需求。因此，在拟议的研究中，我们将建立（1）使用德尔菲专家小组对女性 IC 和具有类似症状的疾病进行患者筛查或流行病学研究的病例定义； (2) 开发并验证可用于识别女性IC患者并区分的症状问卷 来自具有类似病症（例如膀胱过度活动症、尿路感染和子宫内膜异位症）的患者； (3) 制定针对 IC 的自我报告功能状态测量，包括身体、心理、社交、性/关系、角色功能和 IC 患者认为重要的其他因素； (4) 对超过 300,000 名女性的泌尿系统症状进行调查，并使用经过验证的症状问卷对超过 23,000 名女性进行筛查，以估计美国 IC 的患病率，并提供 354 名符合 IC 病例定义的 18 岁以上女性样本和 300 名有类似 IC 症状的女性样本； (5)描述IC对患者生活的影响，包括IC特有的功能状态以及IC对生活质量、身心健康、压力和应对、社会支持、性功能、社会功能、劳动力的影响 参与和收入，以及传统和替代护理的利用，并将这些结果与其他慢性病疾病负担的现有数据进行比较。

Interstitial cystitis (IC) is characterized by chronic and debilitating bladder pain, usually accompanied by urinary frequency and urgency. Because research has been hampered by the lack of a clear and well accepted case definition, little is known about the prevalence of 1C in the population, the full burden of disease for IC patients, the kinds of care they seek, and the kinds of treatment they receive. At present, there is no standardized questionnaire for patient screening or epidemiological studies. The lack of information about IC makes it difficult to meet patients' needs for medical and non-medical care. In the proposed research, therefore, we will establish (1) a case definition of IC in women for patient screening or epidemiological studies using a Delphi panel of experts in IC and diseases with similar symptoms; (2) develop and validate a symptom questionnaire that can be used to identify female IC patients and distinguish them from those with similar conditions (e.g., overactive bladder, urinary tract infection, and endometriosis); (3) develop an IC-specific measure of self-reported functional status, including physical, mental, social, sexual/relationship, role functioning and other factors identified by IC patients as important; (4) survey more than 300,000 women for urinary symptoms and, using the validated symptom questionnaire, screen more than 23,000 to estimate prevalence of IC in the United States and provide a sample of 354 women over age 18 who fit the case definition for IC and 300 who have IC-like symptoms; (5) describe the impact of IC on patient's lives, including IC-specific functional status and the impact of IC on quality of life, mental and physical health, stress and coping, social support, sexual functioning, social functioning, labor force participation and income, as well as utilization of traditional and alternative care and compare these results with existing data on disease burden for other chronic diseases.