Table 1.

Example questions from (A) interview guides and (B) Acro-TSQ

(A) From interview guides
Topic area	Question
Concept elicitation interviews
Treatment effectiveness	“Thinking about [insert current treatment], how well do you think it works? Why? Tell me more about the pattern of your symptoms.” If necessary, probe symptoms: joint or muscle pain, sweating, fatigue, headaches, swelling of extremities. “Tell me more about each symptom.” “Do you ever have symptoms even though you are receiving treatment?”
Treatment experience	“How much discomfort, if any, do you experience with your treatment? Tell me more about that. (If an injection) have you ever had an injection site reaction? [If yes] Tell me about that. (Probes: how did it feel? how long did it last? what did it look like? do you experience pain, lumps/nodules, swelling, inflammation/infection, bruising/hematoma, irritation (red skin, itching), other skin lesions (pitting, abscess, discoloration, ulcer))?” “Have you ever experienced any side effects from this treatment? [If yes] What side effects have you experienced? (Probes: nausea, diarrhea, abdominal pain, constipation, fever, dizziness, headaches, fatigue, flatulence, other skin lesions (pitting, abscess, discoloration, ulcer)”
Emotional impact	“How much, if at all, does your current treatment affect you emotionally? (Probes: feeling angry, frustrated, dependent, anxious, fearful, stressed, loss of independence) Why? How much does your treatment interfere with your ability to socialize? (Probes: spend time with family or friends) Why?”
Cognitive debrief interviews
Clarity	“Looking at question [insert question] in your own words, what is this question asking you?” “Do you have any suggestions about how this question could be revised? If yes, please describe. Why do you think that is clearer?”
Format	“Was it helpful or unhelpful to have the words in the parentheses? Why? Are there other examples that you recommend we include in the parentheses or any that you recommend we omit? If yes, please describe.” “Do you think we need more or fewer response options for any of the questions? Why? Do you have any suggestions for a different set of response options for any of the questions? If yes, why do you prefer these response options?”
Recall period	“What timeframe were you thinking about when you answered the questions that were asking you to think ‘in general’? Was it confusing that the timeframe here was ‘in general’ and the questions right before this used the past 4 weeks? Why or why not?” “Was it easy or difficult to think about ‘the past 4 weeks’?”

(B) From Acro-TSQ after debriefing
Domain	Question
Treatment effectiveness	“In the past 4 weeks, how would you rate the ability of your current acromegaly treatment to improve your acromegaly symptoms?” “In the past 4 weeks, even though you were being treated with medication for acromegaly, did you ever experience acromegaly symptoms?”
Symptom burden	“In the past 4 weeks, how bothered were you, if at all, by the amount of time you experienced acromegaly symptoms?” “In the past 4 weeks, how much, if at all, have acromegaly symptoms interfered with your ability to do daily activities (e.g., walking or moving about, going up/down stairs, household chores, errands, cooking, taking care of children or grandchildren, etc.)?”
Treatment side-effects	“In the past 4 weeks, how much, if at all, have treatment-related gastrointestinal side effects interfered with your ability to participate in leisure activities (e.g., going to restaurants or movies, watching sports, exercising, spending time with family and friends, etc.)?” “Since your last injection, how bothered, if at all, were you by treatment-related injection site reactions during the FIRST FEW DAYS after each injection?”
Convenience of treatment	“How convenient or inconvenient is it to have your current acromegaly treatment administered in its current form (e.g., injections)?” “How bothered, if at all, were you with having to travel to the doctor’s office or clinic to receive your injections?”
Overall satisfaction	“In the past 4 weeks, how satisfied or dissatisfied have you been with your current acromegaly treatment?”