炎症性肠病圆盘的开发：一种用于评估炎症性肠病残疾情况的视觉自我管理工具。
Development of the IBD Disk: A Visual Self-administered Tool for Assessing Disability in Inflammatory Bowel Diseases.
作者信息
Ghosh Subrata, Louis Edouard, Beaugerie Laurent, Bossuyt Peter, Bouguen Guillaume, Bourreille Arnaud, Ferrante Marc, Franchimont Denis, Frost Karen, Hebuterne Xavier, Marshall John K, OʼShea Ciara, Rosenfeld Greg, Williams Chadwick, Peyrin-Biroulet Laurent
机构信息
1Institute of Translational Medicine, College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom; 2Department of Gastroenterology, University Hospital CHU of Liège, Liège, Belgium; 3Department of Gastroenterology, AP-HP, Hôpital Saint-Antoine, ERL 1057 INSERM/UMRS 7203, and GRC-UPMC 03, UPMC Univ, Paris, France; 4Department of Gastroenterology, Imelda Gastrointestinal Clinical Research Centre, Imelda General Hospital, Bonheiden, Belgium; 5CHU Pontchaillou Rennes & Université de Rennes 1, Service des Maladies de l'Appareil Digestif, Rennes, France; 6CHU Nantes, Institut des Maladies de l'Appareil Digestif, Université de Nantes, Nantes, France; 7Department of Gastroenterology and Hepatology, University Hospitals Leuven, Leuven, Belgium; 8Département Gastroenterologie, Hôpital Erasme, Université libre de Bruxelles, Bruxelles, Belgium; 9Department of Gastroenterology, Hepatology and Clinical Nutrition, The Hospital for Sick Children, Toronto, Ontario, Canada; 10Centre Hospitalier Universitaire de Nice, Service de Gastroentérologie et Nutrition Clinique, Nice, France; 11Université de Nice-Sophia-Antipolis, Faculté de Médecine, Nice, France; 12Department of Medicine (Division of Gastroenterology), Farncombe Family Digestive Health Research Institute, McMaster University, Hamilton, Ontario, Canada; 13AbbVie Inc, Dublin, Ireland; 14Division of Gastroenterology, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada; 15Division of Digestive Care and Endoscopy, Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada; and 16Department of Hepato-Gastroenterology and Inserm U954, University Hospital of Nancy, Lorraine University, Vandoeuvre-lès-Nancy, France.
出版信息
Inflamm Bowel Dis. 2017 Mar;23(3):333-340. doi: 10.1097/MIB.0000000000001033.
BACKGROUND
The Inflammatory bowel disease (IBD) Disability Index is a validated tool that evaluates functional status; however, it is used mainly in the clinical trial setting. We describe the use of an iterative Delphi consensus process to develop the IBD Disk-a shortened, self-administered adaption of the validated IBD Disability Index-to give immediate visual representation of patient-reported IBD-related disability.
METHODS
In the preparatory phase, the IBD CONNECT group (30 health care professionals) ranked IBD Disability Index items in the perceived order of importance. The Steering Committee then selected 10 items from the IBD Disability Index to take forward for inclusion in the IBD Disk. In the consensus phase, the items were refined and agreed by the IBD Disk Working Group (14 gastroenterologists) using an online iterative Delphi consensus process. Members could also suggest new element(s) or recommend changes to included elements. The final items for the IBD Disk were agreed in February 2016.
RESULTS
After 4 rounds of voting, the following 10 items were agreed for inclusion in the IBD Disk: abdominal pain, body image, education and work, emotions, energy, interpersonal interactions, joint pain, regulating defecation, sexual functions, and sleep. All elements, except sexual functions, were included in the validated IBD Disability Index.
CONCLUSIONS
The IBD Disk has the potential to be a valuable tool for use at a clinical visit. It can facilitate assessment of inflammatory bowel disease-related disability relevant to both patients and physicians, discussion on specific disability-related issues, and tracking changes in disease burden over time.
背景
炎症性肠病（IBD）残疾指数是一种经过验证的评估功能状态的工具；然而，它主要用于临床试验环境。我们描述了使用迭代德尔菲共识过程来开发IBD Disk——这是经过验证的IBD残疾指数的一种缩短的、可自行填写的改编版本——以便直观呈现患者报告的与IBD相关的残疾情况。
方法
在准备阶段，IBD CONNECT小组（30名医疗保健专业人员）按照重要性感知顺序对IBD残疾指数项目进行排序。指导委员会随后从IBD残疾指数中挑选了10个项目，以便纳入IBD Disk。在共识阶段，IBD Disk工作组（14名胃肠病学家）使用在线迭代德尔菲共识过程对这些项目进行完善并达成一致。成员们还可以提出新的要素或建议对纳入的要素进行修改。IBD Disk的最终项目于2016年2月达成一致。
结果
经过四轮投票，以下10个项目被一致同意纳入IBD Disk：腹痛、身体形象、教育与工作、情绪、精力、人际互动、关节疼痛、排便调节、性功能和睡眠。除性功能外，所有要素均包含在经过验证的IBD残疾指数中。
结论
IBD Disk有可能成为临床就诊时的一种有价值的工具。它有助于评估与炎症性肠病相关的、对患者和医生都很重要的残疾情况，讨论与特定残疾相关的问题，并跟踪疾病负担随时间的变化。
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