Department of Medicine I, University Hospital Schleswig-Holstein, Christian Albrechts University, Schittenhelmstr. 12, 24105 Kiel, Germany.
J Crohns Colitis. 2013 Jul;7(6):497-509. doi: 10.1016/j.crohns.2012.07.027. Epub 2012 Aug 23.
Patients' and physicians' perceptions of ulcerative colitis and its management are important for developing and guiding appropriate therapies. This study explored national differences in patients' and physicians' experiences, expectations, and beliefs about ulcerative colitis.
Structured, cross-sectional, online surveys evaluating various indices were completed by 775 adult patients with ulcerative colitis and 475 physicians actively managing ulcerative colitis patients from France, Germany, Ireland, Spain, the United Kingdom, and Canada.
Patients' classification of their symptom severity differed across countries (mild, 16%-45%; moderate, 46%-58%; severe, 4%-36%). Expectations of disease control also varied, with 26% (Ireland) to 65% (Spain) describing that remission realistically involves "living without symptoms." Within each country, more patients (45%-69%) than physicians (28%-45%) considered ulcerative colitis symptoms to affect patients' quality of life. Mean number of patient-reported flares during the past year ranged from 2.5 in Ireland to 8.0 in France. Self-reported adherence with oral 5-aminosalicylic acid (during remission) was highest in Spain (91% vs 50%-73% across other countries). Spanish patients were more likely to self-adjust their medications (54% vs 2%-5%), but reported the most dissatisfaction with therapy (42% vs 9%-27%). Irish patients were least likely to arrange physician/specialist nurse visits (14% vs 36%-49%) and least open to discussion of their condition.
Important national differences in ulcerative colitis patients' attitudes and perceptions were observed, which may help physicians improve patient care based on country-specific needs and influence self-assessments in clinical trials. The results suggest a need for structured patient education to improve adherence and outcomes.
患者和医生对溃疡性结肠炎及其治疗的看法对于开发和指导适当的治疗方法非常重要。本研究探讨了患者和医生对溃疡性结肠炎的经验、期望和信念的国家差异。
来自法国、德国、爱尔兰、西班牙、英国和加拿大的 775 名成年溃疡性结肠炎患者和 475 名积极管理溃疡性结肠炎患者完成了评估各种指标的结构化、横断面、在线调查。
患者对其症状严重程度的分类因国家而异（轻度，16%-45%；中度，46%-58%；重度，4%-36%）。对疾病控制的期望也存在差异，26%（爱尔兰）至 65%（西班牙）的患者认为缓解实际上意味着“没有症状的生活”。在每个国家内，更多的患者（45%-69%）而不是医生（28%-45%）认为溃疡性结肠炎症状会影响患者的生活质量。过去一年中报告的患者自报发作次数从爱尔兰的 2.5 次到法国的 8.0 次不等。在西班牙，自我报告的口服 5-氨基水杨酸（缓解期）的依从性最高（91%，而其他国家为 50%-73%）。西班牙患者更有可能自行调整药物（54%，而 2%-5%的患者），但对治疗的不满程度最高（42%，而 9%-27%的患者）。爱尔兰患者最不可能安排医生/专科护士就诊（14%，而 36%-49%的患者），也最不愿意讨论病情。
观察到溃疡性结肠炎患者的态度和看法存在重要的国家差异，这可能有助于医生根据特定国家的需求改善患者护理，并影响临床试验中的自我评估。结果表明需要进行结构化的患者教育，以提高依从性和治疗效果。
