@Article{信息:doi 10.2196 / / jmir。9701，作者=“Wittmeier, Kristy DM和Hobbs-Murison, Kendall和Holland, Cindy和Crawford, Elizabeth和Loewen, Hal和Morris, Melanie和Lum Min, Suyin和abu - setta, Ahmed和Keijzer, Richard”，标题=“通过社交媒体参与护理人员识别巨结肠结肠疾病的信息需求:优先级研究和文献综述”，期刊=“J Med Internet Res”，年=“2018”，月=“12”，日=“21”，卷=“20”，数=“12”，页=“e297”，关键词=“巨结肠结肠疾病;护理人员;社交媒体;研究;外科医生;背景:患者和公众参与卫生研究对于产生相关和有影响力的结果很重要。目的:本文旨在通过与家长发起的社交媒体活动合作，优先考虑和总结先天性巨结肠病(HD)患儿护理人员和儿科外科医生的相关信息需求。方法:我们对两个利益相关者群体进行了基于网络的调查，以确定信息需求。护理人员调查是通过全球网络社区进行的，外科医生调查分发给加拿大儿科外科医生协会(CAPS)的成员。 We conducted a literature review to identify evidence on the prioritized topics. Results: Our findings showed that 54.9{\%} (89/162) of the individuals completed the caregiver survey and 23.8{\%} (52/218 listed members) of the pediatric surgeons completed the survey distributed through CAPS. Only 20{\%} (18/89) of the caregivers reported being very satisfied or satisfied with the current HD-related resources. A final prioritized list of information needs included bowel management, nutrition and growth, infection, perianal irritation, gastrointestinal pain, surgical diagnostics, and surgical complications. In total, 87 studies were included in the literature review, which included the following: 8 reviews, 2 randomized controlled trials, 74 cohort studies, and 3 practice guidelines. Two priority issues identified by caregivers had only a single study that met the inclusion criteria, whereas 1 topic had none. Conclusions: With caregiver and surgeon input, we identified 7 information priority areas related to HD. A review of the literature on the priorities found little evidence to support the development of high-quality guidelines. More research is necessary to meet the information needs related to HD as identified by stakeholders. ", issn="1438-8871", doi="10.2196/jmir.9701", url="//www.mybigtv.com/2018/12/e297/", url="https://doi.org/10.2196/jmir.9701", url="http://www.ncbi.nlm.nih.gov/pubmed/30578208" }