Loftus Edward V
Inflammatory Bowel Disease Clinic, Division of Gastroenterology and Hepatology, Mayo Clinic College of Medicine, 200 First Street SW, Rochester, MN 55905, USA.
Inflamm Bowel Dis. 2006 Dec;12(12):1107-13. doi: 10.1097/01.mib.0000235831.01682.8d.
A large, Internet-based survey of a random sample of members of the Crohn's and Colitis Foundation of America was undertaken to gain knowledge and understanding of patients' experiences with ulcerative colitis and first-line therapies. From 49,410 invitations to participate, 1,595 usable responses were received from patients with ulcerative colitis. Patients were prescribed a range of aminosalicylates for their ulcerative colitis. Treatments with the highest proportion of satisfied patients were associated with highest remission rates. Forty-three percent of patients considered their disease to be in remission; however, 74% reported disease relapse during the previous 12 months. Over 60% of patients reported that they were noncompliant with prescribed aminosalicylate dosing schedules, with reasons attributed to frequency of dosing, the number of pills, and the inconvenience of the medication. Many respondents reported that they had made significant lifestyle changes because of their ulcerative colitis, including spending more time at home (46%) and participating in fewer social activities (37%). When asked to describe their ideal treatment, patients considered high efficacy (97%), lack of side effects (74%), nonparenteral dosing (46%), nonrectal dosing (36%), low cost (23%), fewer pills (23%), and less frequent dosing (23%) as "very important." This study demonstrates that continuous symptomatic remission is central to patient satisfaction and that patients find currently available aminosalicylates to be inconvenient. Patients' ideal therapy would be an effective, oral formulation with fewer tablets, less frequent dosing, and minimal side effects. Development of such a therapy would, therefore, potentially improve both patient compliance and overall treatment success.
为了了解溃疡性结肠炎患者的经历以及一线治疗方法，我们对美国克罗恩病和结肠炎基金会成员进行了一项基于互联网的大型随机抽样调查。在49410份参与邀请中，收到了1595份来自溃疡性结肠炎患者的有效回复。患者因溃疡性结肠炎被开具了一系列氨基水杨酸制剂。患者满意度最高的治疗方法与最高的缓解率相关。43%的患者认为自己的疾病处于缓解期；然而，74%的患者报告在过去12个月中疾病复发。超过60%的患者报告他们未遵守规定的氨基水杨酸给药方案，原因包括给药频率、药片数量以及药物使用不便。许多受访者表示，由于溃疡性结肠炎，他们的生活方式发生了重大改变，包括更多时间待在家中（46%）和参加社交活动减少（37%）。当被要求描述他们理想的治疗方法时，患者认为高效（97%）、无副作用（74%）、非肠道给药（46%）、非直肠给药（36%）、低成本（23%）、药片数量少（23%）以及给药频率低（23%）“非常重要”。这项研究表明，持续的症状缓解对患者满意度至关重要，并且患者发现目前可用的氨基水杨酸制剂使用不便。患者理想的治疗方法将是一种有效的口服制剂，药片数量少、给药频率低且副作用最小。因此，开发这样一种治疗方法可能会提高患者的依从性和整体治疗成功率。
