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Table 2 Three illustrative examples of how input from patients informed changes in our descriptions to make them more understandable and relevant to their experience of tinnitus

From: Defining and evaluating novel procedures for involving patients in Core Outcome Set research: creating a meaningful long list of candidate outcome domains

Outcome domain name Initial description Final description Explanation for the change
Confusion Feeling uncertain or unclear Being unable to think clearly, either in general or specifically associated with your tinnitus Patients told us we needed to clarify what was causing the confusion. We also had to be careful to distinguish from another complaint called “worry/concerns” which also had the word “uncertain” in its definition.
Tinnitus pitch Whether the tinnitus has a high note or a low note Whether your tinnitus has a note-like quality, for example high pitch like whistling or low pitch like humming Patients told us we needed to consider different values of pitch so we broadened the description with examples. Changed from “the tinnitus” to “your tinnitus” to make it more personally directed.
Upset To be made unhappy by tinnitus Feeling unhappy or disappointed because of your tinnitus A patient recommended using the Oxford English Dictionary definition. We also substituted “feeling” instead of “to be made”, and added “because of your tinnitus” to make it more personally directed.