Wong Samantha, Walker John R, Carr Rachel, Graff Lesley A, Clara Ian, Promislow Stephen, Rogala Linda, Miller Norine, Rawsthorne Patricia, Bernstein Charles N
IBD Clinical and Research Centre, Department of Clinical Health Psychology, University of Manitoba, Winnipeg, Manitoba.
Can J Gastroenterol. 2012 Aug;26(8):525-31. doi: 10.1155/2012/735386.
Understanding the information needs and preferred vehicles of information delivery to patients with inflammatory bowel disease (IBD) will enhance their care.
To survey persons with longstanding IBD as to their information needs and preferred vehicles of information delivery.
The population-based Manitoba IBD Cohort (n=271, mean disease duration 11 years) was surveyed to assess its information needs across 23 issues, both retrospectively at the time of diagnosis and currently.
Most participants (64%) were initially diagnosed by a gastroenterologist, or otherwise by a family physician (19%) or surgeon (12%). Recalling time of diagnosis, at least 80% rated as very important information about common symptoms of IBD, possible complications, long-term prognosis, medication side effects, self management of symptoms and when to involve the doctor, yet only 10% to 36% believed they received the right amount of information about these issues. Dietary guidance was also regarded as important by 80% to 89%, yet only 8% to 16% received the correct amount of information. Regarding current needs, a large proportion believed it would be very helpful to have more information about long-term prognosis (66%) and diet considerations (60% to 68%). The following information sources were regarded as very acceptable: medical specialist (81%); brochure (79%); family doctor (64%); and website (64%), with 51% ranking the medical specialist as the first choice. In a comparison of the responses of this cohort to those of a recently diagnosed sample, there was remarkable consistency in the information needs and most desired sources of information.
In the present population-based cohort with longstanding disease, dietary information was regarded as the least adequately addressed. There was clear openness to receiving information through other routes than just the medical specialist, suggesting that optimizing brochures and websites would be an important adjunct source of information.
Approximately 10 years after diagnosis, only a small percentage of persons with IBD believed they received the correct amount of information about the issues they regarded as most important to have discussed at diagnosis.
了解炎症性肠病（IBD）患者的信息需求以及他们偏好的信息传递方式将改善对他们的护理。
调查患有长期IBD的人群的信息需求以及他们偏好的信息传递方式。
对以人群为基础的曼尼托巴IBD队列（n = 271，平均病程11年）进行调查，以评估其在23个问题上的信息需求，包括诊断时的回顾性需求和当前需求。
大多数参与者（64%）最初由胃肠病学家诊断，另有19%由家庭医生诊断，12%由外科医生诊断。回顾诊断时间时，至少80%的人认为关于IBD常见症状、可能的并发症、长期预后、药物副作用、症状的自我管理以及何时就医等信息非常重要，但只有10%至36%的人认为他们获得了关于这些问题的适量信息。80%至89%的人也认为饮食指导很重要，但只有8%至16%的人获得了正确数量的信息。关于当前需求，很大一部分人认为获得更多关于长期预后（66%）和饮食注意事项（60%至68%）的信息会非常有帮助。以下信息来源被认为非常可接受：医学专家（81%）；宣传册（79%）；家庭医生（64%）；以及网站（64%），51%的人将医学专家列为首选。将该队列的回答与最近诊断样本的回答进行比较，在信息需求和最希望的信息来源方面存在显著一致性。
在目前这个患有长期疾病的以人群为基础的队列中，饮食信息被认为是得到最少充分解决的问题。显然，人们愿意通过医学专家以外的其他途径获取信息，这表明优化宣传册和网站将是重要的辅助信息来源。
在诊断后大约10年，只有一小部分IBD患者认为他们获得了关于他们认为在诊断时最需要讨论的问题的适量信息。
