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.
Originalsprog | Engelsk |
---|---|
Tidsskrift | Surgical Innovation |
Vol/bind | 28 |
Udgave nummer | 5 |
Sider (fra-til) | 560-566 |
Antal sider | 7 |
ISSN | 1553-3506 |
DOI | |
Status | Udgivet - okt. 2021 |
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Patient-Reported Outcome Measures in Colorectal Surgery: Construction of Core Measures Using Open-Source Research Method
El-Hussuna, A. (Ophavsperson), Rubio-Perez, I. (Ophavsperson), Millan, M. (Ophavsperson), Pellino, G. (Ophavsperson), Negoi, I. (Ophavsperson), Gallo, G. (Ophavsperson), Shalaby, M. (Ophavsperson), Celentano, V. (Ophavsperson), Green, R. (Ophavsperson), Minaya-Bravo, A. (Ophavsperson), Emile, S. (Ophavsperson), Smart, N. J. (Ophavsperson), Maeda, Y. (Ophavsperson), Ivatury, S. J. (Ophavsperson), Mackenzie, G. (Ophavsperson), Yalçınkaya, A. (Ophavsperson), Mellenthin, C. (Ophavsperson), Dudi-Venkata, N. N. (Bidrager), Davies, J. (Ophavsperson), McNair, A. (Ophavsperson), Pata, F. (Ophavsperson), Gymoese Berthelsen, K. (Ophavsperson), Rivadeneira, D. (Ophavsperson), Spinelli, A. (Ophavsperson), Myrelid, P. (Ophavsperson), Mayol, J. (Ophavsperson), Wexner, S. (Ophavsperson) & collaboration, O. (Bidrager), Sage Journals, 2021
DOI: 10.25384/sage.c.5606982.v1, https://sage.figshare.com/collections/Patient-Reported_Outcome_Measures_in_Colorectal_Surgery_Construction_of_Core_Measures_Using_Open-Source_Research_Method/5606982/1
Datasæt
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Patient-Reported Outcome Measures in Colorectal Surgery: Construction of Core Measures Using Open-Source Research Method
El-Hussuna, A. (Ophavsperson), Rubio-Perez, I. (Ophavsperson), Millan, M. (Ophavsperson), Pellino, G. (Ophavsperson), Negoi, I. (Ophavsperson), Gallo, G. (Ophavsperson), Shalaby, M. (Ophavsperson), Celentano, V. (Ophavsperson), Green, R. (Ophavsperson), Minaya-Bravo, A. (Ophavsperson), Emile, S. (Ophavsperson), Smart, N. J. (Ophavsperson), Maeda, Y. (Ophavsperson), Ivatury, S. J. (Ophavsperson), Mackenzie, G. (Ophavsperson), Yalçınkaya, A. (Ophavsperson), Mellenthin, C. (Ophavsperson), Dudi-Venkata, N. N. (Bidrager), Davies, J. (Ophavsperson), McNair, A. (Ophavsperson), Pata, F. (Ophavsperson), Gymoese Berthelsen, K. (Ophavsperson), Rivadeneira, D. (Ophavsperson), Spinelli, A. (Ophavsperson), Myrelid, P. (Ophavsperson), Mayol, J. (Ophavsperson) & Wexner, S. (Ophavsperson), Sage Journals, 2021
DOI: 10.25384/sage.c.5606982, https://sage.figshare.com/collections/Patient-Reported_Outcome_Measures_in_Colorectal_Surgery_Construction_of_Core_Measures_Using_Open-Source_Research_Method/5606982
Datasæt