Hjortswang H, Ström M, Almer S
Department of Health and Environment, Linköping University, Sweden.
Am J Gastroenterol. 1998 Nov;93(11):2203-11. doi: 10.1111/j.1572-0241.1998.00537.x.
The aim of this study was to characterize the health-related quality of life (HRQOL) in a Swedish population of patients with ulcerative colitis.
A total of 211 patients with ulcerative colitis were studied. Demographic and disease-related factors were noted. HRQOL was measured by one disease specific questionnaire, the Rating Form of IBD Patient Concerns (RFIPC) and one generic, The Sickness Impact Profile (SIP). Additional questions regarding information needs, medication, and well-being were asked. Disease activity was measured by symptom cards, laboratory samples, endoscopy, and two indices of disease activity. The influence of additional concomitant disease was also evaluated.
Functional impairment as measured by the SIP was primarily in psychological and social areas and to a lesser extent in the physical areas. The highest scores for individual items of the RFIPC were those related to potential complications, e.g., needing an ostomy appliance, needing surgery, developing cancer, losing bowel control, and uncertainty about the disease and effects of medication. Patients with active disease scored higher on both SIP and RFIPC when compared to patients in remission. Presence of coexisting disease weighted heavily on HRQOL.
Ulcerative colitis has a negative influence on the subjective functional status and seems to cause many worries and concerns. Patients in relapse had greater concerns, more impairment of functional status, and a reduced subjective sense of well-being than patients in clinical remission. Nevertheless, the patients in this Swedish study scored a much better HRQOL than has previously been reported using these questionnaires in patients with ulcerative colitis from the US, France, and Austria.
本研究旨在描述瑞典溃疡性结肠炎患者群体中与健康相关的生活质量（HRQOL）。
共研究了211例溃疡性结肠炎患者。记录了人口统计学和疾病相关因素。HRQOL通过一种疾病特异性问卷《炎症性肠病患者关注评分表》（RFIPC）和一种通用问卷《疾病影响量表》（SIP）进行测量。还询问了有关信息需求、药物治疗和健康状况的其他问题。通过症状卡、实验室样本、内镜检查以及两种疾病活动指数来测量疾病活动度。还评估了其他伴随疾病的影响。
通过SIP测量的功能损害主要在心理和社会领域，在身体领域的程度较轻。RFIPC各单项得分最高的是与潜在并发症相关的项目，例如需要造口器具、需要手术、患癌症、排便失控以及对疾病和药物效果的不确定性。与缓解期患者相比，活动期疾病患者在SIP和RFIPC上的得分更高。并存疾病对HRQOL有很大影响。
溃疡性结肠炎对主观功能状态有负面影响，似乎会引发许多担忧。与临床缓解期患者相比，复发期患者有更多担忧、功能状态受损更严重且主观幸福感降低。然而，在这项瑞典研究中，患者的HRQOL得分比此前在美国、法国和奥地利使用这些问卷对溃疡性结肠炎患者进行研究时所报告的得分要好得多。
