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

  • Alaa El-Hussuna (Aalborg University) (Creator)
  • Ines Rubio-Perez (Creator)
  • Monica Millan (Creator)
  • Gianluca Pellino (Creator)
  • Ionut Negoi (Creator)
  • Gaetano Gallo (Creator)
  • Mostafa Shalaby (Creator)
  • Valerio Celentano (Creator)
  • Ryan Green (Creator)
  • Ana Minaya-Bravo (Creator)
  • Sameh Emile (Creator)
  • Neil J. Smart (Creator)
  • Yasuko Maeda (Creator)
  • Srinivas J. Ivatury (Creator)
  • Graham Mackenzie (Creator)
  • Ali Yalçınkaya (Creator)
  • Claudia Mellenthin (Creator)
  • Nagendra N. Dudi-Venkata (Contributor)
  • Justin Davies (Creator)
  • Angus McNair (Creator)
  • Francesco Pata (Creator)
  • Kasper Gymoese Berthelsen (Creator)
  • David Rivadeneira (Creator)
  • Antonino Spinelli (Creator)
  • Pär Myrelid (Creator)
  • Julio Mayol (Creator)
  • Steven Wexner (Creator)



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.
Date made available2021
PublisherSage Journals

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