Table 1 Health State Descriptions

Transfusion-independent state

You rely on regular medications and routine medical checkups but you do not need to go to a health care facility to receive blood transfusions.

You rarely feel that you need to arrange your life around medical appointments.

You rarely experience fatigue and tiredness that would limit you in performing routine physical activities.

Your disease rarely interferes with your social functioning and family life.

You occasionally have concerns about your future due to your health.

You periodically experience mild to moderate discomfort associated with health conditions and their treatment, but you rarely feel that you are at risk of infections.

You can take care of yourself and routine activities most of the time. You rarely feel that you are a burden to your family due to your health condition.

You often feel positive, motivated, and in control of your life despite your health condition.

Transfusion dependent state

You rely on regular blood transfusions and need to spend significant time at a health care provider facility. You depend on availability and accessibility of health care facilities and your health care providers.

You often feel that you need to arrange your life around medical appointments.

You often experience fatigue and tiredness that limits you in performing routine physical activities.

Your disease often interferes with your social functioning and family life.

You often worry about your future due to your health.

You experience moderate to severe discomfort associated with health conditions and their treatment, and feel that you are at risk of infections.

You rely on family or other caregiver support as you frequently may need assistance to take care of yourself and routine activities. You may often feel that you are a burden to your family due to your health condition.

You often feel sad, hopeless, and helpless because of your health condition.