Patient-Reported Outcome Measures in Colorectal Surgery: Construction of Core Measures Using Open-Source Research MethodShow others and affiliations
2021 (English)In: Surgical Innovation, ISSN 1553-3506, E-ISSN 1553-3514, Vol. 28, no 5, p. 560-566Article in journal (Refereed) Published
Abstract [en]
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.
Place, publisher, year, edition, pages
SAGE PUBLICATIONS INC , 2021. Vol. 28, no 5, p. 560-566
Keywords [en]
patient-reported outcome measures; colorectal; surgery; inflammatory bowel disease; collaborative; patient
National Category
Surgery
Identifiers
URN: urn:nbn:se:liu:diva-174744DOI: 10.1177/1553350621998871ISI: 000628945900001PubMedID: 33710930OAI: oai:DiVA.org:liu-174744DiVA, id: diva2:1541572
2021-04-012021-04-012022-03-21