Epidemiology of Interstitial Cystitis/Painful Bladder Sy

间质性膀胱炎/膀胱疼痛综合征的流行病学

• 批准号: 7293130
• 负责人: Sandra H. Berry
• 金额: $ 21万
• 依托单位: RAND CORPORATION
• 依托单位国家: 美国
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-09-25 至 2009-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7293130
• 关键词: chronic disease /disorder; clinical research; cooperative study; data collection methodology /evaluation; employment /unemployment; epidemiology; female; functional ability; health care service utilization; health surveys; human subject; income; interstitial cystitis; pain; physiologic stressor; quality of life; questionnaires; sex behavior; sign /symptom; social behavior; social support network; urinary bladder

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.

间质性膀胱炎（IC）的特点是慢性和衰弱性膀胱疼痛，通常伴有尿频和尿急。由于缺乏明确和公认的病例定义，研究受到阻碍，因此对IC在人群中的患病率、IC患者的全部疾病负担、他们寻求的护理种类以及他们接受的治疗种类知之甚少。目前，没有用于患者筛查或流行病学研究的标准化问卷。由于缺乏有关IC的信息，难以满足患者的医疗和非医疗护理需求。因此，在拟议的研究中，我们将建立（1）使用德尔菲专家小组在IC和具有类似症状的疾病中进行患者筛查或流行病学研究的女性IC病例定义;（2）开发和验证可用于识别女性IC患者并区分 他们与那些具有类似条件的人（例如，（3）开发自我报告的功能状态的IC特异性测量，包括身体、精神、社会、性/关系、角色功能和IC患者确定为重要的其他因素;（4）调查超过30万名妇女的泌尿系统症状，并使用经验证的症状问卷，筛选超过23个，000来估计IC在美国的患病率，并提供354名18岁以上符合IC病例定义的女性和300名有IC样症状的女性样本;（5）描述IC对患者生活的影响，包括IC特异性功能状态和IC对生活质量的影响，心理和身体健康，压力和应对，社会支持，性功能，社会功能，劳动力 调查结果显示，老年人的参与率和收入以及传统和替代性护理的利用率都在下降，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。