1. Patient-Reported Outcome Measures in Colorectal Surgery: Construction of Core Measures Using Open-Source Research Method.
- Author
-
El-Hussuna A, Rubio-Perez I, Millan M, Pellino G, Negoi I, Gallo G, Shalaby M, Celentano V, Green R, Minaya-Bravo A, Emile S, Smart NJ, Maeda Y, Ivatury SJ, Mackenzie G, Yalçınkaya A, Mellenthin C, Dudi-Venkata NN, Davies J, McNair A, Pata F, Gymoese Berthelsen K, Rivadeneira D, Spinelli A, Myrelid P, Mayol J, and Wexner S
- Subjects
- Humans, Patient Reported Outcome Measures, Quality of Life, Surveys and Questionnaires, Colorectal Surgery
- 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.
- Published
- 2021
- Full Text
- View/download PDF