Table 6 PRO Modified SICT instrument

Inst

The following questions are about the medicine you take for iron overload (too much iron in your body) in the past week (past 7 days). Please read each one and answer by yourself. There are no right or wrong answers. All of your answers will remain confidential. Choose only one answer.

N/A

1

Over the past week, how often did you feel worried that you were not swallowing enough of your medicine for iron overload?

5-point scale: Always, Most of the time, Sometimes, Rarely, Never

2

Over the past week, how often did you feel your medicine for iron overload limited your usual activities?

3

Over the past week, how often did you feel upset about the side effects of your medicine for iron overload?

4

Over the past week, how often did you have trouble remembering to take your medicine for iron overload?

5

Over the past week, how often did you think about stopping taking your medicine for iron overload?

6

Over the past week, how often did you follow your doctor’s instructions for taking your medicine for iron overload?

7

What are the reasons that you did not always take your medicine for iron overload as instructed by your doctor? (Choose all that apply)

Taste, Aftertaste (taste left in your mouth after you swallow), Inconvenience (it’s a problem to take your medicine), Side effects, Prepared the medicine incorrectly, Forgot to take the medicine, Other______

8

Over the past week, how easy or hard was it for you to take your medicine for iron overload?

5-point scale: Very easy, Easy, Neither easy nor hard, Hard, Very hard

9

Over the past week, how bothered were you by the amount of time it took to you to prepare your medicine for iron overload?

5-point scale: Very bothered, Quite bothered, Moderately bothered, A little bothered, Not bothered at all

10

Over the past week, how bothered were you by the amount of time you had to wait to eat food after taking your medicine for iron overload?

11

Medicines can be taken in many ways (for example, tablet dissolved in liquid, tablet swallowed whole, powder sprinkled on food, or injection). Over the past week, how satisfied or dissatisfied were you with how you took your medicine for iron overload?

5-point scale: Very satisfied, Satisfied, Neither satisfied nor dissatisfied, Dissatisfied, Very dissatisfied

12

Over the past week, how satisfied or dissatisfied were you with the medicine you took for iron overload?

13

Which type of medicine for your iron overload do you like best?

Tablet to dissolve in liquid, Powder to sprinkle on food, Tablet to swallow, I don’t know