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炎症性肠病患者的生活挑战:以患者和医疗保健提供者的视角总结峰会

The Challenges of Living with Inflammatory Bowel Disease: Summary of a Summit on Patient and Healthcare Provider Perspectives.

机构信息

Judy Bray Consulting, 125 Grove Avenue, Ottawa, ON, Canada K1S 3A9.

Crohn's and Colitis Canada, 600-60 Street Clair Avenue East, Toronto, ON, Canada M4T 1N5.

出版信息

Can J Gastroenterol Hepatol. 2016;2016:9430942. doi: 10.1155/2016/9430942. Epub 2016 Feb 22.

Abstract

Canada has one of the highest rates of inflammatory bowel disease (IBD) and the disease represents a significant health, social, and economic burden. There is currently no cure for IBD, although earlier diagnosis and new therapies have improved the overall health outcomes and quality of life for patients. Crohn's and Colitis Canada is Canada's only national, volunteer-based charity dedicated to finding cures for IBD and improving the lives of those affected, through research, education, patient programs, advocacy, and increased awareness. On April 30, 2015, Crohn's and Colitis Canada hosted the "Patient and Healthcare Professional Summit on the Burden of Disease in IBD" to obtain a deeper understanding of the unmet needs of IBD patients and their caregivers. Through personal vignettes, patients articulated a pressing need to increase understanding of the challenges faced by people suffering from IBD among both health care professionals and the general public, develop best practices for navigating life transitions and addressing the unique challenges faced by children with IBD, and provide equitable access to appropriate, effective, and affordable treatments. The recommendations that emerged from the summit will inform about efforts to increase public awareness, inform about advocacy strategies, and contribute to the development of research priorities.

摘要

加拿大的炎症性肠病 (IBD) 发病率位居全球前列,这种疾病给患者、家庭和社会带来了沉重的负担。尽管目前还无法治愈 IBD,但早期诊断和新疗法改善了患者的整体健康状况和生活质量。加拿大克罗恩病和结肠炎协会是加拿大唯一一家全国性的、志愿者为主的慈善组织,致力于通过研究、教育、患者项目、宣传和提高认识来寻找治疗 IBD 的方法并改善患者的生活。2015 年 4 月 30 日,加拿大克罗恩病和结肠炎协会举办了“炎症性肠病疾病负担医患峰会”,以深入了解 IBD 患者及其护理人员的未满足需求。通过个人实例,患者表达了强烈的愿望,希望提高医疗保健专业人员和公众对 IBD 患者所面临挑战的认识,为应对儿童 IBD 患者所面临的独特挑战制定生活过渡的最佳实践,并提供公平获得适当、有效和负担得起的治疗方法的机会。峰会提出的建议将用于提高公众意识、制定宣传策略,并为制定研究重点做出贡献。

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