Patient-Reported Outcome Measures in Colorectal Surgery: Construction of Core Measures Using Open-Source Research Method

Abstract

Purpose. 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. Method. 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. Results. 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. Conclusion. 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.

Impact of an Operating Room Nurse Preoperative Dialogue on Anxiety, Satisfaction and Early Postoperative Outcomes in Patients Undergoing Major Visceral Surgery—A Single Center, Open-Label, Randomized Controlled Trial

“…PROMs as subjective endpoints are mostly assessed through surveys. Nevertheless, an increasing number of studies address PROMs to standardize and validate these outcome measures such as the recent description from the #OpenSourceResearch collaborative of a general-psycho-physical score as a core outcome after colorectal surgery [ 23 ]. Regarding PREMs, their relation to surgical outcomes and PROMs is more subtle.…”

Postoperative complications and waiting time for surgical intervention after radiologically guided drainage of intra-abdominal abscess in patients with Crohn’s disease

“…To retrieve data, PD codes were used as these are registered accurately in radiology departments. Third, the authors did not have information about CD activity and patients’ reported outcome measures, which are important in evaluating any outcome after surgical interventions 22 .…”

Current status and future perspectives of collaboration in surgical research: A scoping review of the evidence

“…For instance, the Eagle study, conducted by the ESCP cohort studies committee, used clustered, randomized controlled trial design, while #OpenSourceResearch collaboration researched PROMs in colorectal surgery and implemented the principle of crowd science on the Twitter platform. 27 Despite this, surgical research can be difficult even in centers with well-developed infrastructure. Many of the challenges in surgical research relate to the fact that surgical procedures are complex health care interventions that are inter-and intraoperator dependent, meaning that "unlike 20-milligram tablets, no 2 surgical procedures are the same.…”

“…The paper was recently published in a surgical journal. 27 The interested reader is referred to supplementary files about Twitter interactions and the log file showing these discussions.…”

“…Projects such as the above-mentioned study might pave the way for a new method of research, where patients can be widely involved in surgical projects. 27 Figure 2 shows the concept of OpenSourceResearch collaboration, and how social media was used in producing research.…”