Drossman Douglas A, Morris Carolyn Blank, Schneck Susan, Hu Yuming J B, Norton Nancy J, Norton William F, Weinland Stephan R, Dalton Christine, Leserman Jane, Bangdiwala Shrikant I
UNC Center for Functional GI and Motility Disorders, Division of Gastroenterology and Hepatology, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-7080, USA.
J Clin Gastroenterol. 2009 Jul;43(6):541-50. doi: 10.1097/MCG.0b013e318189a7f9.
Although clinicians generally make treatment decisions in irritable bowel syndrome (IBS) related to the type of symptoms, other factors such as the perceived severity and the risks patients are willing to tolerate for effective treatment are also important to consider. These factors are not fully understood.
To describe among patients with IBS their symptoms and severity, quality of life and health status, medications taken, and the risk that they would take to continue medications for optimal relief.
Adult patients diagnosed with IBS who accessed the websites of the International Foundation for Functional GI Disorders or the University of North Carolina Center for Functional GI Disorders filled out questionnaires to address the study aims.
The 1966 respondents (83% female, 91% white, 78% US/Canada) reported impaired health status: restricting on average 73 days of activity in a year, having poor health-related quality of life particularly with dietary restrictions, mood disturbance, and interference with daily activity, and 35% reported their symptoms as severe defined primarily as pain, bowel difficulties, bloating, and eating/dietary restrictions). These symptoms were reported in some combination by over 90%, and 35.1% endorsed all 4 items. To receive a treatment that would make them symptom free, patients would give up 25% of their remaining life (average 15 y) and 14% would risk a 1/1000 chance of death. Most of the medications being taken were for pain relief and 18% were taking narcotics. Complementary and alternative treatments were used by 37%.
Patients accessing IBS informational websites report moderate-to-severe impairments in health status, and would take considerable risk to obtain symptom benefit. There is an unmet need to find effective treatments for patients with IBS and regulatory agencies might consider raising risk-benefit ratios when approving new medications for IBS.
尽管临床医生通常根据肠易激综合征（IBS）的症状类型做出治疗决策，但其他因素，如感知到的严重程度以及患者为有效治疗愿意承受的风险，也同样是需要考虑的重要因素。这些因素尚未得到充分理解。
描述IBS患者的症状及严重程度、生活质量和健康状况、所服用的药物，以及他们为持续用药以获得最佳缓解而愿意承担的风险。
访问国际功能性胃肠病基金会网站或北卡罗来纳大学功能性胃肠病中心网站的成年IBS患者填写问卷以满足研究目的。
1966名受访者（83%为女性，91%为白人，78%来自美国/加拿大）报告健康状况受损：平均每年限制活动73天，健康相关生活质量较差，尤其是在饮食限制、情绪紊乱和日常活动受到干扰方面，35%的受访者将其症状报告为严重，主要定义为疼痛、肠道问题、腹胀以及饮食限制）。超过90%的受访者以某种组合形式报告了这些症状，35.1%的受访者认可所有4项。为了接受能使症状消失的治疗，患者愿意放弃剩余生命的25%（平均15年），14%的患者愿意冒千分之一的死亡风险。所服用的大多数药物是用于缓解疼痛的，18%的患者正在服用麻醉药品。37%的患者使用了补充和替代疗法。
访问IBS信息网站的患者报告健康状况存在中度至重度损害，并且愿意承担相当大的风险以获得症状改善。对于IBS患者，存在对有效治疗的未满足需求，监管机构在批准IBS新药时可能会考虑提高风险效益比。
