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

Alaa El-Hussuna*, Ines Rubio-Perez, Monica Millan, Gianluca Pellino, Ionut Negoi, Gaetano Gallo, Mostafa Shalaby, Valerio Celentano, Ryan Green, Ana Minaya-Bravo, Sameh Emile, Neil J. Smart, Yasuko Maeda, Srinivas J. Ivatury, Graham Mackenzie, Ali Yalçınkaya, Claudia Mellenthin, Nagendra N. Dudi-Venkata, Justin Davies, Angus McNairFrancesco Pata, Kasper Gymoese Berthelsen, David Rivadeneira, Antonino Spinelli, Pår Myrelid, Julio Mayol, Steven Wexner, OpenSourceResearch collaboration

*Corresponding author for this work

Research output: Contribution to journalJournal articleResearchpeer-review

8 Citations (Scopus)

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.

Original languageEnglish
JournalSurgical Innovation
Volume28
Issue number5
Pages (from-to)560-566
Number of pages7
ISSN1553-3506
DOIs
Publication statusPublished - Oct 2021

Keywords

  • collaborative
  • colorectal
  • inflammatory bowel disease
  • patient
  • patient-reported outcome measures
  • surgery

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