TABLE 2.
Decision making regarding HIV D+/R+ transplantation
| Reasons to accept an HIV D+ organ and representative quotations | |
|---|---|
| Situational factors | |
| Already HIV positive | I wasn’t necessarily in the market specifically for an HIV organ, but like I said, because I’ve been exposed, because I carry the virus, it just kind of made sense to me (P2 at-transplant) |
| Trust in care team | … my doctor is a really good doctor and even the nurse practitioner and everything, so I trust them enough to know that they wouldn’t put me in harm’s way (P16 posttransplant) |
| Belief they would not get a transplant otherwise | I’ve been waiting for 5 years for a transplant, and none seemed to come my way, so this is like the best opportunity for me to get a new kidney. (P13 posttransplant) |
| Mortality on waitlist | It wasn’t nothing else to say about [deciding to accept an HIV D+ organ] but get it, because I have children … [without the transplant] I wouldn’t be alive. (P19 posttransplant) |
| Trust that would receive well-matched donor | … as long as the [donor] had their HIV under control, was undetectable and adhering to their medication and … that the drugs that that [the donor] was on were compatible with whatever I was taking … [I] felt comfortable with it. (P15 posttransplant) |
| Prior success of HIV D+/R+ | They’ve had successes with this type of transplant so why not? (P3 at-transplant) |
| Own HIV under control | I was doing good, my numbers, my cd4 was high, and being undetectable so I really wasn’t worried. (P9 posttransplant) |
| Perception that HIV+ candidates cannot/do not receive HIV D– transplants | Where I’m from, they don’t do [transplants] with HIV positive [recipients]. Somehow they put them on the bottom of the list and kill them off. (P11 posttransplant) |
| Anticipated benefits | |
| Avoid long wait for donor organ | You can jump around [the deceased donor waitlist] if you want to accept hep C or HIV kidneys… you start getting calls around 6 years [on the waitlist] but I could have been on there for 10 years. (P10 at-transplant) |
| Opportunity to get transplant | I was just not knowing when I was gonna get the transplant or if I ever would, but the HOPE project actually gave me hope, and that’s when I actually knew that I was gonna get my kidney transplant. I just knew it after that. (P4 posttransplant) |
| Contribute to science | [My wife and I] liked [the study] and everything we can be able to assist in further data research, we like to be helpful in this kind of stuff in any way possible. (P18 at-transplant) |
| Healthier at time of transplant | … you want to be as strong as you can before you go under the knife. I think that was a key element. (P13 at-transplant) |
| Help others on the waitlist | Why wouldn’t the entire world want us to get HIV-positive organs so that we could free up organs for people who aren’t. (P20 posttransplant) |
| Perceived risks and concerns about accepting an HIV D + organ and representative quotations | |
| Anticipated clinical risks | |
| Donor-derived superinfection (infection with new HIV strain) | I thought that you would get [HIV] worse than what you have already, if [the donor] is affected with it. That was bothering me, kind of. (P17 at-transplant) |
| Needing to change HIV medications posttransplant | [I would want to ask other HIV D+/R+ recipients] Did they have to change your medications? Because they didn’t for me, but that was something that they were speculating on. So, did they have to change your medications? How did your body take to that? Because you’re getting all these other medications. So, how is all that working out for you? (P7 posttransplant) |
| Impact of immunosuppression on HIV | My main concern was would it go down, and [my infectious disease physician] told me for transplant patients it takes a dip, but that’s only because of all the medications. (P6 posttransplant) |
| Effect of HIV and HIV therapies on organ function | I have been thinking about how HIV meds tend to have an impact on kidney function so [I’m] hoping that I won’t experience that and kind of just fly past that and just have a long, productive life with this kidney. (P12 posttransplant) |
| Quality of HIV donor organ | My main concern was the health of the organ … if [the donor] take care of himself. Was he an alcoholic? You don’t know. (P16 posttransplant) |
| Coinfection | I was concerned about a hep positive organ because I wasn’t too educated on the hep, you know, hep positive organs and how that works with the body. I didn’t want anything that would affect my immune system even more. (P8 at-transplant) |
| Anticipated social risks | |
| Anonymity | As long as I could remain anonymous and nothing was disclosed about me personally, I was fine with it. (P12 at-transplant) |
| Stigma if D+/R+ transplant were discussed publicly | I know people would [treat me differently if they heard about my HIV D+ organ]. There’s still that fear and prejudice in people’s minds and actions. (P5 posttransplant) |
D–, negative donor; D+/R+, HIV+ donor to HIV+ recipient; HIV+, HIV positive; P, participant.