Drossman Douglas A, Chang Lin, Schneck Susan, Blackman Carlar, Norton William F, Norton Nancy J
UNC Center for Functional GI and Motility Disorders, Division of Gastroenterology and Hepatology, University of North Carolina, 4150 Bioinformatics Building CB#7080, Chapel Hill, NC 27599-7080, USA.
Dig Dis Sci. 2009 Jul;54(7):1532-41. doi: 10.1007/s10620-009-0792-6. Epub 2009 Apr 1.
There is a growing need to understand from the patient's perspective the experience of irritable bowel syndrome (IBS) and the factors contributing to its severity; this has been endorsed by the Food and Drug Administration (FDA). Accordingly, we conducted focus groups to address this issue. A total of 32 patients with mostly moderate to severe IBS were recruited through advertising and were allocated into three focus groups based on predominant stool pattern. The focus groups were held using standard methodology to obtain a general assessment of the symptoms experienced with IBS, its impact, and of factors associated with self-perceived severity. Patients described IBS not only as symptoms (predominantly abdominal pain) but mainly as it affects daily function, thoughts, feelings and behaviors. Common responses included uncertainty and unpredictability with loss of freedom, spontaneity and social contacts, as well as feelings of fearfulness, shame, and embarrassment. This could lead to behavioral responses including avoidance of activities and many adaptations in routine in an effort for patients to gain control. A predominant theme was a sense of stigma experienced because of a lack of understanding by family, friends and physicians of the effects of IBS on the individual, or the legitimacy of the individual's emotions and adaptation behaviors experienced. This was a barrier to normal functioning that could be ameliorated through identifying with others who could understand this situation. Severity was linked to health-related quality of life (HRQOL) and was influenced by the intensity of abdominal pain and other symptoms, interference with and restrictions relating to eating, work, and social activities, and of the unpredictability of the condition. This study confirms the heterogeneous and multi-component nature of IBS. These qualitative data can be used in developing health status and severity instruments for larger-scale studies.
从患者的角度了解肠易激综合征（IBS）的体验以及导致其严重程度的因素的需求日益增长；这已得到美国食品药品监督管理局（FDA）的认可。因此，我们开展了焦点小组讨论来解决这个问题。通过广告招募了共32名大多患有中度至重度IBS的患者，并根据主要的大便模式将他们分为三个焦点小组。焦点小组讨论采用标准方法进行，以全面评估IBS患者所经历的症状、其影响以及与自我感知严重程度相关的因素。患者将IBS不仅描述为症状（主要是腹痛），而且主要描述为它对日常功能、思想、情感和行为的影响。常见的回答包括不确定性和不可预测性，失去自由、自发性和社交联系，以及恐惧、羞耻和尴尬的感觉。这可能导致行为反应，包括避免活动以及在日常生活中做出许多调整，以使患者能够获得控制感。一个主要的主题是，由于家人、朋友和医生对IBS对个体的影响缺乏了解，或者对个体所经历的情绪和适应行为的合理性缺乏理解，患者会感到耻辱。这是正常功能的一个障碍，通过与能够理解这种情况的其他人建立联系可以得到改善。严重程度与健康相关生活质量（HRQOL）相关，并受到腹痛和其他症状的强度、饮食、工作和社交活动受到的干扰和限制以及病情的不可预测性的影响。这项研究证实了IBS的异质性和多成分性质。这些定性数据可用于开发用于大规模研究的健康状况和严重程度评估工具。
