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Table 2 PROMETHEUS concepts and domains with items

From: Development of a Patient Reported Measure of Experimental Transplants with HIV and Ethics in the United States (PROMETHEUS)

Concept Domain Sub-domains Borrowed Scale Preliminary Item Final Item in PROMETHEUS v1.0
Consent Process Satisfaction With process BICEP 7. Were you satisfied with the informed consent process? C3. I was satisfied with the consent process to get the new organ.
With information given
Information Provided Sufficiency 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.
Complexity
Understood
Questions Asked questions
All answered
Vulnerability Illness
Time
Pressure 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 Already HIV+
Avoid/stop dialysis
Shorter wait time, healthier at time of transplant
More likely to get transplant 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.
Contribution to science / research, help others
Discuss/Consult Study Participation With Partner/Spouse
Family
Friends
Study doctor(s) 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.
Other doctor(s)
Concerns Transplant concerns
HIV concerns
Other concerns
Role Passive
Collaborative
Active
Time to Decide Immediate or almost immediate
Some time
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 No regrets 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.
Initial regrets
Lingering regrets 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 Thanks to donor/donor family
Thanks to medical team
Thanks to research
Thanks to “God”/religion
Fear PROMIS Anxiety SF 8a 1. I felt fearful … A1. I felt fearful …
Fairness Self
Others
Impact of Transplant Physical Function More active, life back to normal
Less active, healthier at/before transplant
Social Function Relationships w/partner, family, friends 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 …
Ability to work
Ability to travel
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 HIV status not public
Don’t want others reactions/ opinions (negative or positive)
Privacy
Worried about stigma
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