Engaging Patients and Caregivers in Research for Pediatric Inflammatory Bowel Disease: Top 10 Research Priorities
Engaging Patients and Caregivers in Research for Pediatric Inflammatory Bowel Disease: Top 10 Research Priorities
复制标题
DOI：
10.1097/mpg.0000000000002396
复制
发表时间：
2019-09-01
影响因子：
2.9
通讯作者：
Otley, Anthony
中科院分区：
文献类型：
--
作者：
Grant, Amy;Crane, Melissa;Otley, Anthony
简介：包括在儿科炎症性肠病（IBD）的生活经验的个人是必不可少的，以建立一个研究议程，这是相互影响的治疗和那些经历的疾病。研究方法：使用James Lind联盟方法来确定研究优先级，成立了一个由现任和前任IBD儿科患者、护理人员和临床医生组成的10人指导委员会。在加拿大全国范围内进行的一项全国性调查得出了一些不确定性，这些不确定性分为未回答的和已回答的研究问题。随后，分发了一份研究优先次序调查，受访者对他们的前20个研究不确定性进行了排名。举行了最后的优先级会议，以商定前10大不确定性。结果如下：从363名参与者提交的1209个研究问题中，列表减少到105个指示性问题，这些问题在范围内，并被认为在文献中没有答案。通过国家研究优先次序调查，这一名单进一步减少。在最终的研究共识会议上确定的前10个不确定性，来自所有利益相关者群体的21名参与者，包括“IBD的原因是什么？“IBD可以预防吗？“饮食在小儿IBD的管理中起什么作用？“其他问题涉及突发事件，生物标志物，最佳患者教育，药物和早期诊断的长期影响，心理支持的作用以及最佳诊断方法。结论：这项研究增加了一个独特的视角，得出了一个由患者和护理人员和临床医生重要的儿科IBD研究不确定性的列表。
Introduction: Including individuals with lived experience in pediatric inflammatory bowel disease (IBD) is essential to establishing a research agenda that is mutually impactful to both those treating and those experiencing the disease. Methods: Using the James Lind Alliance approach to research priority setting, a 10-member steering committee composed of current and former pediatric patients with IBD, caregivers, and clinicians was formed. A national survey, disseminated across Canada, elicited uncertainties which were divided into unanswered and answered research questions. Subsequently a research prioritization survey was disseminated where respondents ranked their top 20 research uncertainties. A final prioritization meeting was held to agree upon the top 10 uncertainties. Results: From 1209 research questions submitted by 363 participants, the list was reduced to 105 indicative questions that were within scope and deemed unanswered in the literature. Via the national research prioritization survey, this list was further reduced. The top 10 uncertainties identified at the final research consensus meeting, with 21 participants from all stakeholder groups, included "What are the causes of IBD?," "Can IBD be prevented?," "What role does diet have in the management of pediatric IBD?." Other questions concerned flare ups, biomarkers, optimal patient education, long-term effects of medication and early-diagnosis, role of psychological support, and optimal approach to diagnosis. Conclusion: This research adds a unique perspective by deriving a list of pediatric IBD research uncertainties important by patients and caregivers and clinicians.