Table 2 PROMETHEUS concepts and domains with items

Consent Process

Satisfaction

BICEP

7. Were you satisfied with the informed consent process?

C3. I was satisfied with the consent process to get the new organ.

Information Provided

BICEP

1. Did you get all the information you needed to make a good decision about participating in [study]?

C1. I got all the information I needed to make a good decision about getting the new organ.

Questions

–

–

–

Vulnerability

–

–

–

–

–

–

BICEP

3. Did you feel any pressure to participate in [study]?

C2. I felt pressure to accept the new organ.

Experimental Item

3. When I was told there was an organ available for me I felt pressure to accept it.

REMOVED

Decision Making

Reasons to Accept HIV D+ Organ

–

–

–

–

–

–

–

–

–

Experimental Item

5. Because of my race, joining this study was the best chance I had at getting a transplant.

D3. Because of my race, accepting this organ was the best chance I had at getting a transplant.

Experimental Item

6. Because of my HIV status, joining this study was the best chance I had at getting a transplant.

D4. Because of my HIV status, accepting this organ was the best chance I had at getting a transplant.

–

–

–

Discuss/Consult Study Participation With

–

–

–

–

–

–

–

–

–

Experimental Item

2. Trust in the healthcare workers on the study team was a significant factor in my decision to participate.

D2. Trust in doctors and nurses who took care of me was a significant factor in my decision to get a new organ.

–

–

–

Concerns

–

–

–

Role

–

–

–

Time to Decide

–

–

–

Trust

In Medicine

A-WFPT Scale

1. Sometimes doctors care more about what is convenient for them than about their patients’ medical needs.

B1. Sometimes doctors care more about what is convenient for them than about their patients’ medical needs.

A-WFPT Scale

2. Doctors are extremely thorough and careful.

B2. Doctors are extremely thorough and careful.

A-WFPT Scale

3. You completely trust doctors’ decisions about which medical treatments are best.

B3. You completely trust doctors’ decisions about which medical treatments are best.

A-WFPT Scale

4. A doctor would never mislead you about anything.

B4. A doctor would never mislead you about anything.

A-WFPT Scale

5. All in all, you trust doctors completely.

B5. All in all, you trust doctors completely.

R-HCSD Scale

1. The Health Care System does its best to make patients’ health better.

B7. The Health Care System does its best to make patients’ health better.

In Medical Research

R-HCSD Scale

9. The Health Care System experiments on patients without them knowing.

B6. The health care system experiments on patients without them knowing.

Experimental Item

2. Trust in the healthcare workers on the study team was a significant factor in my decision to participate.

D2. Trust in doctors and nurses who took care of me was a significant factor in my decision to get a new organ.

In Institutions

MTHCS Scale

16. Health care institutions provide the highest quality in medical care.

REMOVED

Emotions

Decisional Regret

Decision Regret Scale (DRS)

1. It was the right decision.

E1. It was the right decision.

DRS

3. I would go for the same choice if I had to do it over again.

E3. I would make the same decision if I had to do it again.

DRS

5. The decision was a wise one.

E5. The decision was a wise one.

–

–

–

DRS

2. I regret the choice that was made.

E2. I regret the decision that was made.

DRS

4. The choice did me a lot of harm.

E4. The decision did me a lot of harm.

Feeling Unprepared for Transplant

At time of tx

Time b/w consent & tx very short

–

–

–

Not ready for tx when first offered

–

–

–

For recovery

Immunosuppression

Experimental Item

1. My recovery was harder than I imagined.

D1. My recovery was harder than I imagined.

Follow-up visits

Generally worse than imagined

Grateful/Lucky

–

–

–

Fear

PROMIS Anxiety SF 8a

1. I felt fearful …

A1. I felt fearful …

Fairness

–

–

–

Impact of Transplant

Physical Function

–

–

–

Social Function

PROMIS Anxiety SF 8a

2. I found it hard to focus on anything other than my anxiety …

A2. I found it hard to focus on anything other than my anxiety …

Overall Health

–

–

–

Mental Health/ Cognitive Abilities

PROMIS Anxiety SF 8a

1. I felt fearful …

A1. I felt fearful …

PROMIS Anxiety SF 8a

2. I found it hard to focus on anything other than my anxiety …

A2. I found it hard to focus on anything other than my anxiety …

PROMIS Anxiety SF 8a

3. My worries overwhelmed me …

A3. My worries overwhelmed me …

PROMIS Anxiety SF 8a

4. I felt uneasy …

A4. I felt uneasy …

PROMIS Anxiety SF 8a

5. I felt nervous …

A5. I felt nervous …

PROMIS Anxiety SF 8a

6. I felt like I needed help for my anxiety …

A6. I felt like I needed help for my anxiety …

PROMIS Anxiety SF 8a

7. I felt anxious …

A7. I felt anxious …

PROMIS Anxiety SF 8a

8. I felt tense …

A8. I felt tense …

Stigma

HIV Status

Experimental Item

6. Because of my HIV status, joining this study was the best chance I had at getting a transplant.

D4. Because of my HIV status, accepting this organ was the best chance I had at getting a transplant.

Experimental Item

7. Being a part of this study made me feel better about having HIV.

D5. Being able to get this transplant made me feel better about having HIV.

Experimental Item

8. This study makes me feel like my HIV diagnosis gives me the unique ability to help others.

REMOVED

Addiction / Substance Abuse

–

–

–

Race/Ethnicity

R-HCSD Scale

7. Patients get the same medical treatment from the Health Care System, no matter what the patient’s race or ethnicity.

B8. Patients get the same medical treatment from the health care system, no matter what the patient’s race or ethnicity.

Experimental Item

5. Because of my race, joining this study was the best chance I had at getting a transplant.

D3. Because of my race, accepting this organ was the best chance I had at getting a transplant.

Poverty

–

–

–

Sexuality

–

–

–

Gender Identity

–

–

–

Transplant/Illness

–

–

–

Support

From Partner/Spouse

–

–

–

From Family

–

–

–

From Friends

–

–

–

From Medical Team

Experimental Item

2. Trust in the healthcare workers on the study team was a significant factor in my decision to participate.

D2. Trust in doctors and nurses who took care of me was a significant factor in my decision to get a new organ.

From Research Team

Experimental Item

2. Trust in the healthcare workers on the study team was a significant factor in my decision to participate.

D2. Trust in doctors and nurses who took care of me was a significant factor in my decision to get a new organ.

HIV Status of Donor

False-Positive or HIV- Donor is Better

Experimental Item

4. I was relieved to learn that I got an HIV negative organ and not one that was HIV positive.

REMOVED

Does Not Matter

–

–

–

Who Knows About Study Participation

Want to Tell/Has Told People

–

–

–

Does Not Want to Tell

–

–

–

–

–

–

–

–

–

–

–

–