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Table 3 Qualitative feedback from handbook development Stage 2 (Phases 1 and 2)

From: Development of a decision aid to inform patients’ and families’ renal replacement therapy selection decisions

Patient concerns Representative quotes Specific challenges encountered Solutions
Patients did not know their treatment options “First, can you explain the two treatments? What is the difference between those two treatments?” · Defining patients’ various treatment options · Added a treatment definition page (“What are the Treatments?”)
· Replaced all abbreviations with actual treatment names
· Making complex medical terminology memorable · Color-coded each treatment option
· Associated each treatment with its own icon
Intimidating amount of complex information “And I just feel like this is so much information that's written that is not going to be taken in.” · Translating research evidence into plain language · Developed a question and answer format in plain language
· Revised the language in the to achieve a fourth grade reading level
· Created a new section (“What is on Each Page?”) to introduce and define research quality
· Communicating research quality · Used pictures of “real” doctors and patients diverse in age, sex, and gender
· Placed tabs throughout the handbook to divide it into smaller sections
· Making the handbook user-friendly · Added an interactive value clarification exercise (“How Do I Choose a Treatment?”)
Understanding numerical information or statistical concepts “I don’t want these chances or things…it’s real confusing. I want to know the facts.” · Presenting graphical illustrations of data · Used graphical presentations patients responded to most positively
· Supplemented graphical presentations with text to reiterate the intended message
· Adopted a double page spread format to appeal to a diverse group of readers
· Using both positive and negative framing of statistical information · Used an example study to anchor each head-to-head treatment comparison
· Explaining effect size · Modified effect size terminology from a “small/medium/large amount” to “a little/somewhat/ a lot better”