Patient-Reported Outcome Measures in Colorectal Surgery: Construction of Core Measures Using Open-Source Research Method
2021; SAGE Publishing; Volume: 28; Issue: 5 Linguagem: Inglês
10.1177/1553350621998871
ISSN1553-3514
AutoresAlaa El‐Hussuna, Inés Rubio-Pérez, Mónica Millán, Gianluca Pellino, Ionuţ Negoi, Gaetano Gallo, Mostafa Shalaby, Valerio Celentano, Ryan Green, Ana Minaya‐Bravo, Sameh Hany Emile, Neil Smart, Yasuko Maeda, Srinivas Joga Ivatury, Graham Mackenzie, Ali Yalçınkaya, Claudia Mellenthin, Nagendra N. Dudi‐Venkata, Justin Davies, Angus McNair, Francesco Pata, Kasper Gymoese Berthelsen, David E. Rivadeneira, Antonino Spinelli, Pär Myrelid, Julio Mayol, Steven D. Wexner,
Tópico(s)Colorectal Cancer Screening and Detection
ResumoPurpose. 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.
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