Sickle Cell Anemia - Patient Survey
We're exploring how well the current tools for managing sickle cell anemia pain and inflammation at home work for patients, and where there is room for improvement. Please answer based on your own experience. All of your responses will remain confidential. Thank you for your time.
What type of Sickle Cell Anemia do you have?
Hemoglobin SS (HbSS)
Hemoglobin SC (HbSC)
Hemoglobin S / Beta - Thalassemia: beta (0)
Hemoglobin S / Beta - Thalassemia: beta (+)
Other
How old are you?
18 or under
19-25
26-30
31-40
41- 59
60+
How often do you experience a sickle cell crisis where you must go to a hospital?
Once a week
Once every two weeks
Once a month
Once every 2-3 months
Once every 6 months
Once a year
What would you rate your everyday pain due to Sickle Cell Anemia? (scale 0-10, 0 = no pian, 10 = Worst pain ever experienced)
What non-drug management techniques or tools are the least successful in treating everyday pain?
What non-drug management techniques or tools are commonly used to treat everyday pain?
What non-drug management techniques or tools are the most successful in treating everyday pain?
When experiencing pain, where on your body is it located most often? (ex: hands, feet, joints, bones etc.)
Importance
When treating pain and inflammation at home due to sickle cell anemia, how important is it that you are able to:
*
Rows
Not at all important (1)
Slightly important (2)
Moderately important (3)
Very important (4)
Extremely important (5)
Minimize the likelihood of everyday pain progressing into a pain crisis.
Minimize the likelihood of needing narcotics to manage everyday pain.
Minimize the likelihood of an emergency room visit or hospitalization for pain that could have been managed at home.
Minimize the time it takes for a pain management technique to reduce pain.
Minimize the time it takes to reduce inflammation.
Minimize the likelihood of pain during daily activities.
Minimize the likelihood of pain recurring after treatment.
Minimize the likelihood of painful events in upper extremities (hands).
Minimize the likelihood of painful events in lower extremities (feet).
Minimize the likelihood of painful events in the back, chest, or belly.
Minimize the likelihood of poor circulation in the extremities (hands and feet).
Satisfaction
When treating pain and inflammation at home due to sickle cell anemia, how satisfied are you with your ability to:
*
Rows
Not at all satisfied (1)
Slightly satisfied (2)
Moderately satisfied (3)
Very satisfied (4)
Extremely satisfied (5)
Minimize the likelihood of everyday pain progressing into a pain crisis.
Minimize the likelihood of needing narcotics to manage everyday pain.
Minimize the likelihood of an emergency room visit or hospitalization for pain that could have been managed at home.
Minimize the time it takes for a pain management technique to reduce pain.
Minimize the time it takes to reduce inflammation.
Minimize the likelihood of pain during daily activities.
Minimize the likelihood of pain recurring after treatment.
Minimize the likelihood of poor circulation in the extremities (hands and feet).
Minimize the likelihood of painful events in the back, chest, or belly.
Minimize the likelihood of painful events in lower extremities (feet).
Minimize the likelihood of painful events in upper extremities (hands).
What non drug pain management tools or techniques have you used previously that were successful? Please tell us what you used and describe how it helped your pain and for how long.
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