TABLE 3.

Summary Tracking Matrix Showing GODDESS Modified/Removed Terms and Reasons for Modification

Section	Initial Version	Modified Version	Reason(s) for Modification
Instructions	The following questions ask about the impact having desmoid tumor(s) has had on your life in the past 7 days. Please select the one response choice that best represents your answer	The next set of questions are about how often you have felt things about your health in the past 7 days.	Instructions were separated into frequency and disturbance sections to improve clarity by question type (phase 1)
		The next set of questions are about how much you have felt things about your health in the past 7 days
	The following questions ask about your desmoid tumor symptoms during the past 24 hours. Please select the one response choice that best represents your answer	The following questions ask about your health during the past 24 hours. Please select the one response choice that best represents your answer	The attribution factor was removed to prevent bias and encourage patients to think about their general experiences (phase 2)
Response scale	Frequency (“how often”) items—0–10 scale; 0 = never, 10 = all the time	Frequency (“how often”) items—none of the time, a little of the time, some of the time, most of the time, all the time	Patients thought that a descriptive frequency scale would be easier to answer for frequency-type questions (phase 1)
Item removal	During the past 24 hours how bad was your worst feeling of zapping pain?	Removed	Patients were unclear what zapping means and described it in various different ways. Three patients did not think that it was relevant (phase 2)
	During the past 24 hours how bad was your worst feeling of muscle ache?	Removed	Patients thought that this was very similar to dull pain or did not find it relevant to their experiences (phase 2)
	During the past 24 hours how bad was your worst feeling of throbbing pain?	Removed	Patients defined this in various ways (eg, pulsating, lesser version of shooting, or swollen) or did not find it relevant to them (phase 2)
	During the past 24 hours how bad was your worst feeling of being worn out?	Removed	All patients thought that this was the same as or very similar to fatigue. Most reported fatigue as the preferred form (phase 2)
	During the past 24 hours how bad was your worst swelling in other areas due to your tumor(s)?	Removed	Patients did not think that this was relevant or preferred that we ask about the worst swelling around their tumor(s) (phase 2)
	During the past 7 days how often did difficulty sleeping (including falling asleep, staying asleep, or waking up early) interfere with your usual daily activities?	Removed	Patients thought that the number of sleep-related questions was repetitive. They thought that this question is covered later in the item on daily activities (phase 2)
	During the past 7 days what was your worst difficulty bending, lifting, or stooping?	Removed	This was no longer needed because of overlap with the symptom question on range of motion (phase 2)
	During the past 24 hours how bad was your worst feeling of tiredness?	Removed	Patients thought that this item was similar to others and identified fatigue as a more relevant, all-encompassing term to describe their experiences (phase 3)
	During the past 24 hours what was your worst weakness around your tumor(s)?	Removed	The item was added after phase 2 because patients were confused with the inclusion of the word “muscle” if their muscle had been removed. The item was removed after phase 3 because patients preferred the specificity of “muscle weakness”
Item modification	During the past 24 hours what was your worst swelling around your tumor?	During the past 24 hours what was your worst swelling around your tumor(s)?	A change was implemented in all instances to be inclusive of those with more than 1 tumor (phase 1)
	During the past 24 hours what was your worst difficulty moving, twisting, or bending near your tumor?	At its worst, how difficult was moving (for example twisting or bending) near your tumor(s)?	Patients were interpreting this question in different ways. They would think of 3 items differently (“difficulty moving” was understood by all) and would tend to answer this item according to the sensation that was most relevant to them (phase 2)
	During the past 7 days how often have you had difficulty doing moderate activities (such as moving a table, pushing a vacuum cleaner, bowling, or playing golf)?	During the past 7 days how often have you had difficulty doing moderate activities (such as pushing a vacuum cleaner, playing with children, or taking a long walk)?	Patients did not think that bowling, golfing, and pushing a table were regular moderate activities that they encountered. The item was changed to reflect the patient-suggested activities (phase 2) Examples were now included in parentheses for congruency across items (phase 2)
	During the past 7 days how often have you had difficulty doing vigorous activities such as running, lifting heavy objects, participating in strenuous sports?	During the past 7 days how often have you had difficulty doing vigorous activities (such as running, lifting heavy objects, or participating in strenuous sports)?	Examples were now included in parentheses for congruency across items (phase 2)
	During the past 7 days how often have you had difficulty bending, lifting, or stooping?	During the past 7 days how often have you had difficulty moving (for example twisting or bending) near your tumor(s)?	Patients were interpreting this question in different ways. They would think of 3 items differently (“difficulty moving” was understood by all) and would tend to answer this item according to the sensation that was most relevant to them (phase 2)

Abbreviation: GODDESS, Gounder/DTRF Desmoid Symptom/Impact Scale.