Halpert Albena, Dalton Christine B, Palsson Olafur, Morris Carolyn, Hu Yuming, Bangdiwala Shrikant, Hankins Jane, Norton Nancy, Drossman Douglas
Center for Digestive Disorders, Boston University School of Medicine, Boston, Massachusetts, USA.
Am J Gastroenterol. 2007 Sep;102(9):1972-82. doi: 10.1111/j.1572-0241.2007.01254.x. Epub 2007 May 3.
Patient education improves clinical outcomes in patients with chronic illness, but little is known about the education needs of patients with IBS.
The objective of this study was to identify: (1) patients perceptions about IBS; (2) the content areas where patients feel insufficiently informed, i.e., "knowledge gaps" about diagnosis, treatment options, etiology, triggers, prognosis, and role of stress; and (3) whether there are differences related to items 1 and 2 among clinically significant subgroups.
The IBS-Patient Education Questionnaire (IBS-PEQ) was developed using patient focus groups and cognitive item reduction of items. The IBS-PEQ was administered to a national sample of IBS patients via mail and online.
Frequencies of item endorsements were obtained. Clinically relevant groups, (a) health care seekers or nonhealth care seekers and (b) users or nonusers of the Web, were identified and grouped as MD/Web, MD/non-Web, and non-MD/Web.
1,242 patients completed the survey (371 via mail and 871 online), mean age was 39.3 +/- 12.5 yr, educational attainment 15 +/- 2.6 yr, 85% female, IBS duration 6.9 +/- 4.2 yr, 79% have seen an MD for IBS in the last 6 months, and 92.6% have used the Web for health information. The most prevalent IBS misconceptions included (% of subjects agreeing with the statement): IBS is caused by lack of digestive enzymes (52%), is a form of colitis (42.8%), will worsen with age (47.9%), and can develop into colitis (43%) or malnutrition (37.7%) or cancer (21.4%). IBS patients were interested in learning about (% of subjects choosing an item): (1) foods to avoid (63.3%), (2) causes of IBS (62%), (3) coping strategies (59.4%), (4) medications (55.2%), (5) will they have to live with IBS for life (51.6%), and (6) research studies (48.6%). Patients using the Web were better informed about IBS.
(1) Many patients hold misconceptions about IBS being caused by dietary habits, developing into cancer, colitis, causing malnutrition, or worsening with age; (2) patients most often seek information about dietary changes; and (3) educational needs may be different for persons using the internet for medical information.
患者教育可改善慢性病患者的临床结局，但对于肠易激综合征（IBS）患者的教育需求却知之甚少。
本研究的目的是确定：（1）患者对IBS的看法；（2）患者认为信息不足的内容领域，即关于诊断、治疗选择、病因、触发因素、预后以及压力作用方面的“知识空白”；（3）在具有临床意义的亚组中，与第1项和第2项相关的情况是否存在差异。
通过患者焦点小组和对项目进行认知性删减，编制了IBS患者教育问卷（IBS-PEQ）。通过邮寄和在线方式，将IBS-PEQ施用于全国范围内的IBS患者样本。
获取项目认可的频率。确定了具有临床相关性的组，（a）寻求医疗服务者或非寻求医疗服务者，以及（b）网络使用者或非网络使用者，并将其分为医学博士/网络组、医学博士/非网络组和非医学博士/网络组。
1242名患者完成了调查（371名通过邮寄，871名通过在线方式），平均年龄为39.3±12.5岁，受教育年限为15±2.6年，85%为女性，IBS病程为6.9±4.2年，79%的患者在过去6个月内因IBS看过医学博士，92.6%的患者使用网络获取健康信息。IBS最常见的误解包括（同意该陈述的受试者百分比）：IBS由消化酶缺乏引起（52%）、是结肠炎的一种形式（42.8%）、会随年龄增长而恶化（47.9%）、会发展为结肠炎（43%）或营养不良（37.7%）或癌症（21.4%）。IBS患者有兴趣了解（选择某一项目的受试者百分比）：（1）应避免的食物（63.3%）、（2）IBS的病因（62%）、（3）应对策略（59.4%）、（4）药物（55.2%）、（5）他们是否将终生患有IBS（51.6%）以及（6）研究（48.6%）。使用网络的患者对IBS了解得更多。
（1）许多患者对IBS存在误解，认为其由饮食习惯引起、会发展为癌症、结肠炎、导致营养不良或随年龄增长而恶化；（2）患者最常寻求关于饮食改变的信息；（3）对于通过互联网获取医疗信息的人，其教育需求可能有所不同。
