Epidemiology of Interstitial Cystitis/Painful Bladder Syndrome

间质性膀胱炎/膀胱疼痛综合征的流行病学

• 批准号: 7491567
• 负责人: Sandra H. Berry
• 金额: $ 113.96万
• 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 2012-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7491567
• 关键词: Advocate; Age; Bladder; Caring; Chronic; Chronic Disease; Clinical Research; Condition; Consensus; DTR gene; Data; Development; Diagnosis; Disease; Epidemiologic Studies; Epidemiology; Exclusion; Female; Focus Groups; Health; Household; Income; Increased frequency of micturition; Interstitial Cystitis; Laboratories; Life; Measures; Medical; Nature; Overactive Bladder; Pain; Patients; Population; Prevalence; Psyche structure; Quality of life; Questionnaires; Research; Risk Factors; Role; Sampling; Screening procedure; Sex Functioning; Social Functioning; Social support; Staging; Stress and Coping; Surveys; Symptoms; Testing; United States; Urinary tract infection; Urine; Validation; Week; Woman; Work; base; burden of illness; care seeking; diphtheria toxin receptor; endometriosis; evaluation/testing; functional status; health related quality of life; heparin-binding EGF-like growth factor; labor force participation; painful bladder syndrome; programs; research clinical testing; self-reported functional status; social; urinary

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）的特征是慢性和使人衰弱的膀胱疼痛，通常伴有尿频和紧迫性。由于缺乏明确且可接受的病例定义的研究受到阻碍他们收到。目前，没有用于患者筛查或流行病学研究的标准化问卷。缺乏有关IC的信息使得很难满足患者对医疗和非医疗护理的需求。因此，在拟议的研究中，我们将建立（1）使用Delphi IC专家小组和具有相似症状的疾病的Delphi专家小组，在患者筛查或流行病学研究中对IC的病例定义； （2）开发和验证可用于识别女性IC患者并区分的症状问卷 它们来自具有相似条件的人（例如，过度活跃的膀胱，尿路感染和子宫内膜异位症）； （3）开发一种特定于自我报告的功能状态的量度，包括身体，精神，社会，性/关系，角色功能以及IC患者确定的其他因素； （4）调查30万名女性尿症状，并使用经过验证的症状问卷调查，筛查了23,000多名以上的女性，以估计美国IC的患病率，并提供了354名以上18岁以上的女性，这些妇女适合IC和IC的案例定义300人患有类似IC的症状； （5）描述IC对患者生活的影响，包括特定于IC的功能状态以及IC对生活质量，心理和身体健康，压力和应对，社会支持，性功能，社交功能，劳动力的影响 参与和收入，以及对传统和替代护理的利用，并将这些结果与其他慢性疾病负担的现有数据进行比较。

项目成果

Suicidal ideation among patients with bladder pain syndrome/interstitial cystitis.

• DOI: 10.1016/j.urology.2011.12.053
• 发表时间: 2012-08
• 期刊: Urology
• 影响因子: 2.1
• 作者: Hepner KA;Watkins KE;Elliott MN;Clemens JQ;Hilton LG;Berry SH
• 通讯作者: Berry SH

Prevalence and correlates of sexual dysfunction among women with bladder pain syndrome/interstitial cystitis.

• DOI: 10.1016/j.urology.2010.10.016
• 发表时间: 2011-03
• 期刊: Urology
• 影响因子: 2.1
• 作者: Bogart LM;Suttorp MJ;Elliott MN;Clemens JQ;Berry SH
• 通讯作者: Berry SH

The prevalence and overlap of interstitial cystitis/bladder pain syndrome and chronic prostatitis/chronic pelvic pain syndrome in men: results of the RAND Interstitial Cystitis Epidemiology male study.

• DOI: 10.1016/j.juro.2012.08.088
• 发表时间: 2013-01
• 期刊: JOURNAL OF UROLOGY
• 影响因子: 6.6
• 作者: Suskind, Anne M.;Berry, Sandra H.;Ewing, Brett A.;Elliott, Marc N.;Suttorp, Marika J.;Clemens, J. Quentin
• 通讯作者: Clemens, J. Quentin

Sleep disturbances and nocturnal symptoms: relationships with quality of life in a population-based sample of women with interstitial cystitis/bladder pain syndrome.

• DOI: 10.5664/jcsm.4292
• 发表时间: 2014-12
• 期刊: Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine
• 作者: W. Troxel;M. Booth;Daniel J Buysse;M. Elliott;A. Suskind;J. Q. Clemens;S. Berry

Development, validation and testing of an epidemiological case definition of interstitial cystitis/painful bladder syndrome.

• DOI: 10.1016/j.juro.2009.12.103
• 发表时间: 2010-05
• 期刊: The Journal of urology
• 作者: Berry SH;Bogart LM;Pham C;Liu K;Nyberg L;Stoto M;Suttorp M;Clemens JQ
• 通讯作者: Clemens JQ