Article type
Abstract
Background:
This research aimed to validate a lay summary template of a recommendation from An Australian Living Guideline for the Pharmacological Management of Inflammatory Arthritis relating to dose reduction or discontinuation of biologic or targeted synthetic disease-modifying anti-rheumatic drugs (b/tsDMARDs) for people with rheumatoid arthritis in remission or with low disease activity.
Methods:
A researcher living with inflammatory arthritis familiarized herself with the recommendation using simpler language and iteratively updated the recommendation alongside
the multidisciplinary Living Guideline team. Once completed, the recommendation was validated with 5 people living with rheumatoid arthritis using the think-aloud method. Data were analyzed thematically, and results were mapped to the 9 domains of the Evaluative Linguistic Framework (ELF).
Results:
The most common domains discussed by participants were the use of rhetorical elements (the function of each stage of the guideline), technicality of the vocabulary, and factual content of the text. Participants agreed that the individual sections of the recommendation served their purpose, but that “it needs to be clearer that the purpose of this guideline is to work with your rheumatologist, not to use this of your own accord.” Participants suggested that some of the medical terminology could be replaced with visual cues: “If they were showing this on the news, they would use a graphic, and fill in images of people to show the number who might benefit or be harmed… that would be good here.” Most participants felt that the medical information (including the drug names and trial outcomes) in the recommendation was presented appropriately, but that it was “condescending” to suggest that “people’s preferences may vary as that’s obvious.”
Discussion:
This is the first time that a recommendation from living guidelines has been translated into consumer-facing materials. This study demonstrates the role that the ELF can have in guiding the development of future recommendations.
This research aimed to validate a lay summary template of a recommendation from An Australian Living Guideline for the Pharmacological Management of Inflammatory Arthritis relating to dose reduction or discontinuation of biologic or targeted synthetic disease-modifying anti-rheumatic drugs (b/tsDMARDs) for people with rheumatoid arthritis in remission or with low disease activity.
Methods:
A researcher living with inflammatory arthritis familiarized herself with the recommendation using simpler language and iteratively updated the recommendation alongside
the multidisciplinary Living Guideline team. Once completed, the recommendation was validated with 5 people living with rheumatoid arthritis using the think-aloud method. Data were analyzed thematically, and results were mapped to the 9 domains of the Evaluative Linguistic Framework (ELF).
Results:
The most common domains discussed by participants were the use of rhetorical elements (the function of each stage of the guideline), technicality of the vocabulary, and factual content of the text. Participants agreed that the individual sections of the recommendation served their purpose, but that “it needs to be clearer that the purpose of this guideline is to work with your rheumatologist, not to use this of your own accord.” Participants suggested that some of the medical terminology could be replaced with visual cues: “If they were showing this on the news, they would use a graphic, and fill in images of people to show the number who might benefit or be harmed… that would be good here.” Most participants felt that the medical information (including the drug names and trial outcomes) in the recommendation was presented appropriately, but that it was “condescending” to suggest that “people’s preferences may vary as that’s obvious.”
Discussion:
This is the first time that a recommendation from living guidelines has been translated into consumer-facing materials. This study demonstrates the role that the ELF can have in guiding the development of future recommendations.