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

• Published in: Surgical innovation Vol. 28; no. 5; p. 560
• Main Authors: El-Hussuna, Alaa, Rubio-Perez, Ines, Millan, Monica, Pellino, Gianluca, Negoi, Ionut, Gallo, Gaetano, Shalaby, Mostafa, Celentano, Valerio, Green, Ryan, Minaya-Bravo, Ana, Emile, Sameh, Smart, Neil J, Maeda, Yasuko, Ivatury, Srinivas J, Mackenzie, Graham, Yalçınkaya, Ali, Mellenthin, Claudia, Dudi-Venkata, Nagendra N, Davies, Justin, McNair, Angus, Pata, Francesco, Gymoese Berthelsen, Kasper, Rivadeneira, David, Spinelli, Antonino, Myrelid, Pår, Mayol, Julio, Wexner, Steven
• Format: Journal Article
• Language: English
• Published: United States 01.10.2021
• Subjects: Colorectal Surgery; Humans; Patient Reported Outcome Measures; Quality of Life; Surveys and Questionnaires; colorectal; patient-reported outcome measures; collaborative; patient; inflammatory bowel disease; surgery
• ISSN: 1553-3514
• DOI: 10.1177/1553350621998871

. 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.