Protocol - Sickle Cell Disease Health-Related External Stigma - Adolescent and Adult

1.*

People believe that someone with sickle cell pain is as mentally and emotionally healthy as the average person.

5

4

3

2

1

2.

People believe that it is mostly the patients fault when his/her pain does not get better.

5

4

3

2

1

3.*

People are sympathetic when they hear about my pain condition.

5

4

3

2

1

4.

People believe that sickle cell is used as an excuse to get pain medication.

5

4

3

2

1

5.*

People understand the suffering experienced by someone with chronic pain.

5

4

3

2

1

6.

I feel embarrassed to tell people that I cannot do something because of my pain.

5

4

3

2

1

7.

People think less of someone who is unable to work because of sickle cell.

5

4

3

2

1

8.

People believe that having sickle cell pain is a sign of weakness.

5

4

3

2

1

9.

People think that someone taking prescription pain medication on a regular basis is a "drug addict".

5

4

3

2

1

10.

When people hear that someone has sickle cell pain, they think that person is also likely to have mental or emotional problems.

5

4

3

2

1

1.*

Most doctors believe that there is a real physical cause for sickle cell pain.

5

4

3

2

1

2.

Doctors think that people with sickle cell exaggerate their pain.

5

4

3

2

1

3.

Many doctors think that people with sickle cell pain want more pain medication than is necessary for their physical pain.

5

4

3

2

1

4.

Doctors think that sickle cell pain is mostly a mental or emotional problem.

5

4

3

2

1

5.*

Most doctors think that people with sickle cell use pain medication appropriately.

5

4

3

2

1

6.*

Most doctors think that people with sickle cell complain about their illness about as much as people with other medical conditions.

5

4

3

2

1

7.

Many doctors believe that people with sickle cell could be more physically active if they wanted.

5

4

3

2

1

8.

Many doctors think that people with sickle cell are less emotionally stable than people with other medical problems.

5

4

3

2

1

9.

Many doctors think that people with sickle cell pain are "drug addicts".

5

4

3

2

1

10.

Most doctors would prefer not to treat people with sickle cell disease.

5

4

3

2

1

1.*

My family understands that I have physical pain.

5

4

3

2

1

2.

My family thinks I need less pain medication than I take.

5

4

3

2

1

3.

My family feels that I exaggerate how much I hurt in order to get out of doing things that I dont want to do.

5

4

3

2

1

4.*

My family understands that I can use only as much pain medication as is medically necessary.

5

4

3

2

1

5.

My family thinks that I could be more physically active if I wanted.

5

4

3

2

1

6.

My family thinks that by taking pain medication on a regular basis, I have become a "drug addict".

5

4

3

2

1

7.*

My family understands that sickle cell is a real medical condition.

5

4

3

2

1

8.

I feel that my family has less respect for me since I have sickle cell.

5

4

3

2

1

9.

My family thinks that sickle cell pain is more of a mental or emotional problem than a physical problem.

5

4

3

2

1

10.

My family feels embarrassed to tell people that I have sickle cell.

5

4

3

2

1