53141Aalborg Universitets Hospital, Aalborg, Denmark.
Cirujano General En Hospital Universitario La Paz, Madrid, Spain.
Surg Innov. 2021 Oct;28(5):560-566. doi: 10.1177/1553350621998871. Epub 2021 Mar 12.
. The primary aim of the study was to review the existing literature about patient-reported outcome measures (PROMs) in colorectal cancer and IBD. The secondary aim was to present a road map to develop a core outcome set via opinion gathering using social media. . This study is the first step of a three-step project aimed at constructing simple, applicable PROMs in colorectal surgery. This article was written in a collaborative manner with authors invited both through Twitter via the #OpenSourceResearch hashtag. The 5 most used PROMs were presented and discussed as slides/images on Twitter. Inputs from a wide spectrum of participants including researchers, surgeons, physicians, nurses, patients, and patients' organizations were collected and analyzed. The final draft was emailed to all contributors and 6 patients' representatives for proofreading and approval. . Five PROM sets were identified and discussed: EORTC QLQ-CR29, IBDQ short health questionnaire, EORTC QLQ-C30, ED-Q5-5L, and Short Form-36. There were 315 tweets posted by 50 tweeters with 1458 retweets. Awareness about PROMs was generally limited. The general psycho-physical well-being score (GPP) was suggested and discussed, and then a survey was conducted in which more than 2/3 of voters agreed that GPP covers the most important aspects in PROMs. . Despite the limitations of this exploratory study, it offered a new method to conduct clinical research with opportunity to engage patients. The general psycho-physical well-being score suggested as simple, applicable PROMs to be eventually combined procedure-specific, disease-specific, or symptom-specific PROMs if needed.
. 本研究的主要目的是回顾关于结直肠癌和炎症性肠病患者报告结局测量(PROMs)的现有文献。次要目的是通过社交媒体意见收集来展示制定核心结局测量集的路线图。. 这项研究是旨在构建结直肠手术中简单、适用的 PROMs 的三步法项目的第一步。本文是通过与通过#OpenSourceResearch 标签在 Twitter 上邀请的作者合作撰写的。最常使用的 5 种 PROM 以幻灯片/图片的形式在 Twitter 上展示和讨论。从包括研究人员、外科医生、医生、护士、患者和患者组织在内的广泛参与者那里收集和分析了意见。最终草稿通过电子邮件发送给所有贡献者和 6 名患者代表进行校对和批准。. 确定并讨论了五套 PROM 集:EORTC QLQ-CR29、IBDQ 短期健康问卷、EORTC QLQ-C30、ED-Q5-5L 和 Short Form-36。共有 50 名发推者发布了 315 条推文,其中 1458 条被转发。对 PROMs 的认识普遍有限。建议并讨论了一般心理生理健康评分(GPP),然后进行了一项调查,超过 2/3 的投票者同意 GPP 涵盖了 PROMs 中最重要的方面。. 尽管这项探索性研究存在局限性,但它提供了一种新的方法来进行临床研究,并为患者参与提供了机会。建议将一般心理生理健康评分作为简单、适用的 PROMs,如果需要,最终与特定于手术、特定于疾病或特定于症状的 PROMs 相结合。