Abstract
Background
Organ transplantation from donors with hepatitis C viremia (HCV) to recipients without HCV (HCV D+/R−) has excellent medical outcomes. Less is known about the psychosocial impact and experiences of HCV D+/R− recipients, particularly outside of clinical trials.
Methods
We conducted in-depth, semistructured interviews with 24 HCV D+/R− recipients (kidney, n = 8; lung, n = 7; liver, n = 5; heart, n = 3; simultaneous heart and kidney, n = 1) who received transplants outside of clinical trials and were treated for HCV after transplant to assess their experiences and perspectives. We used thematic analysis to analyze the interviews.
Results
Interviewees’ reasons for accepting an HCV D + organ were based on perceived benefits and confidence in the effectiveness of HCV treatment. The majority (62%) received HCV treatment within 1 month after transplant (range, 1 day–2 months). Most interviewees reported positive transplant outcomes, including reduced wait times and improved survival, health, physical activity, and quality of life. Overall, themes and experiences did not differ significantly between different organ transplant types. Generally, interviewees did not perceive stigma from those aware of the HCV D+ transplant; yet, disclosure was selective and a few recipients reported concerns from family members about posttransplant HCV transmission risk. Other common concerns included treatment costs and delays, which were not always anticipated by recipients.
Conclusions
Our findings suggest that HCV D+/R− kidney, liver, and heart and lung transplant recipients outside of clinical trials had overall positive experiences. However, HCV transmission risk, treatments costs, and treatment delays were a source of concern that might be mitigated with targeted pretransplant education.
Keywords: hepatitis C, infectious disease, patient experiences, solid organ transplant
Kidney, liver, heart, and lung transplant recipients who acquired hepatitis C from donor organs described positive experiences overall; however, some had concerns about hepatitis C transmission, treatment costs, and unexpected treatment delays, highlighting opportunities for improved education.
The transplantation from donors with hepatitis C viremia (HCV D+) to recipients without hepatitis C (HCV R−), abbreviated here as HCV D+/R− transplantation, has expanded in the past decade. This expansion is a response to the continued shortage of donor organs in the context of the ongoing opioid epidemic that has led to a significant number of deceased donor organs with HCV as well as the advent of HCV direct-acting antiviral (DAA) therapies with high HCV cure rates [1, 2]. Highly effective DAAs have not only resulted in fewer transplant candidates with HCV but have also enabled HCV D+/R− transplants with successful posttransplant HCV treatment among recipients [3, 4]. Clinical trials have demonstrated the safety and efficacy of HCV D+/R− transplantation using DAAs, including in kidney [5–10], lung [11–13], liver [14–16], and heart [17–20] transplants.
HCV D+/R− transplants are being performed across organ types both in clinical trials and as clinical care [21]. Although trials have shown excellent medical outcomes, less is known about the psychological impact of and recipients’ experiences with such transplants. Two prior studies examining patient attitudes toward and experiences with HCV D+/R− transplantation exclusively enrolled kidney and lung transplant recipients within clinical trials [22, 23]. One study found that participants reported positive experiences and confidence in their decision to accept an HCV D + organ [23]. However, participants may have been biased toward reporting more positive experiences because they had early and reliable access to early DAA treatment through the trial, and all had successful HCV treatment [23]. In addition, potential therapeutic misconceptions were found among clinical trial enrollees in which some participants may have erroneously believed that research transplants were established standard clinical care [23].
Outside of trials, access to DAA for HCV D+/R− recipients typically involves demonstrating HCV transmission in the recipient before treatment. With this “transmit-and-treat” approach, obtaining DAAs often necessitates approval from insurance providers, and because these drugs are costly, the need for prior authorization with initial denials, making treatment delays common [24]. Recipient perspectives and experiences may also differ based on organ type, length of recovery, transplant-related complications, how quickly patients accessed DAA treatment, timing of consent from transplant, and experiences with stigma related to having an HCV D+ organ. Outside of clinical trials, there is also concern about the adequacy of informed consent and education about HCV D+/R− transplants, including HCV complications, treatments, and risks [25].
Given these knowledge gaps, we aimed to assess the psychosocial impact of and experiences related to HCV D+/R− transplantation of various organ types (ie, kidney, lung, liver, and heart) when the transmit-and-treat approach was used outside of clinical trials. Understanding recipients’ experiences and perspectives may help inform clinical practice regarding HCV D+/R− transplants as this type of transplant becomes standard care.
METHODS
Study Design
We conducted a cross-sectional in-depth interview with HCV D+/R− transplant recipients. We followed the Consolidated Criteria for Reporting Qualitative Studies [26]. This study was approved by Johns Hopkins Medicine institutional review board (IRB00103150).
Setting and Participant Selection
We recruited participants through an ongoing observational cohort study and direct referral by clinical teams of transplant recipients without HCV who received solid organ transplants from donors with HCV viremia if they had given consent to be contacted for future studies. The observational study was initiated in August 2018 and enrolled 52 participants (IRB00184512). Participants were eligible if they were aged 18 years or older, were English-speaking, and had their HCV D+/R− transplant performed as clinical care outside of a clinical trial. HCV from the donor was transmitted to recipients because of the transplant, after which recipients were treated for HCV with DAAs using a transmit-and-treat approach. The timing of treatment depended on the time needed to obtain insurance approval. Clinical teams at Johns Hopkins also referred patients to the research team if a patient received a solid organ transplant from donors with HCV viremia. The research team verified that individuals referred to the study met the eligibility criteria. Purposive sampling was used to ensure the representation of HCV D+/R− recipients of multiple solid organ types (ie, kidney, lung, liver, and heart) [27]. Participation in the study was voluntary and did not affect clinical care. Two study team members (S. R. and Z. P.) recruited selected recipients by phone at least 2 months after the HCV D+/R− transplant to allow sufficient time for recovery.
Data Collection
The interview guide was modified from a version previously used by our team with transplant recipients who were clinical trial participants [23]. These modifications were made with the input of the research team, which included a transplant infectious disease physician and a bioethicist. The interview guide covered several domains, including experiences with (1) decision-making, (2) informed consent, (3) the transmit and treat approach, (4) timing of HCV treatment, (5) waiting to start HCV treatment, (6) communication with others about transplant, (7) potential stigma related to receiving an HCV+ organ, and (8) accessing the HCV treatment. The interview guide consisted of 21 open-ended questions and several probes.
We conducted in-depth interviews from May 2020 through June 2021. Study team members with training and experience in qualitative interviewing techniques (S .R. and Z. P.) conducted interviews by phone. Interviews continued until thematic saturation for the full range of domains in the interview guide. Interviewers did not have prior relationships with study participants. Interviewees provided oral informed consent before the interviews and, after the interview, were given a $25 gift card as compensation for their time. All interviews were audio recorded and lasted approximately 30 minutes. Audio recordings were transcribed and checked for accuracy.
Data Analysis
We thematically analyzed interview transcripts. Two independent coders (K. V. and K. D.), trained in qualitative analysis, deductively and inductively coded interviews using NVivo (Version 12, QSR International) [28]. We used deductive codes based on a previous study of HCV D+/R− transplant recipients and iteratively developed inductive codes based on the data [23, 29]. Coders achieved an interrater reliability Kappa >0.8 before independent coding, and discrepancies in coding were resolved through team consensus. The study team reviewed the codes to identify patterns across codes in the data. We developed an outline of emerging thematic categories and a mind map of major topics from participant responses (Figure 1). Through discussions of the thematic categories and the mind map, we further clarified themes. We used notetaking/memoing, team discussions, and expert feedback to strengthen confirmability, dependability, credibility, and transferability.
Figure 1.
Mind map of topics related to HCV treatment and HCV D+ transplant that emerged from recipient interviews. HCV, hepatitis C viremia.
RESULTS
Study Population
Of the 34 eligible individuals contacted, 24 were interviewed. The participation rate was 71% (2 unable to contact, 5 declined, 3 ineligible). The interviewees’ median age was 64 years. Most were White (75%), male (75%), and kidney recipients (33%) (Table 1).
Table 1.
Characteristics of the Study Population (n = 24)
| Characteristic | N (%) |
|---|---|
| Age at transplant, median (IQR) | 64 (58, 70) |
| Sex, n (%) | |
| Male | 18 (75%) |
| Female | 6 (25%) |
| Race, n (%) | |
| White | 18 (75%) |
| Black | 3 (13%) |
| Asian | 2 (8%) |
| Other | 1 (4%) |
| Employment status, n (%) | |
| Employed | 6 (25%) |
| Unemployed | 8 (33%) |
| Retired | 10 (42%) |
| Marital status, n (%) | |
| Singlea | 5 (21%) |
| Married | 16 (66%) |
| Widowed | 3 (13%) |
| Organ, n (%) | |
| Kidney | 8 (33%) |
| Liver | 5 (21%) |
| Lung | 7 (29%) |
| Heart | 3 (13%) |
| Heart and kidney | 1 (4%) |
| Time between transplant and DAA initiationb | |
| 0–30 days | 18 |
| 31–60 days | 4 |
| 61–86 days | 1 |
| Type of primary insurance | |
| Publicc | 14 |
| Private | 9 |
| Not specified | 1 |
Abbreviations: DAA, direct-acting antiviral; IQR, interquartile range.
aSingle includes divorced and legally separated.
bOne patient did not receive DAA.
cMedicare advantage plans counted as public.
Four main themes identified were: (1) reasons to accept an HCV D+ organ; (2) challenges and concerns with HCV D+ transplants; (3) impact of HCV D+/R– transplants; and (4) overall experience with HCV D+ transplants. No salient differences in themes emerged across organ types. Table 2 includes illustrative quotations for each theme. Following each quotation, we provide in parentheses the participant's numerical identifier (indicated with a “P”), their gender, and organ type.
Table 2.
Illustrative Quotes by Theme and Subtheme
| Theme | Representative Quotations |
|---|---|
| Decision-making: reasons to accept | |
| Effectiveness of HCV treatment | “I’d heard from the team that in prior patients, it was cured, that it–I wasn’t really concerned because I knew that I would have the medication and that it would be cured. I didn’t really have any doubt. I just went forward with it and felt fine with it all.” (P26, male, lung) “After he had his transplant, they were able to knock out the hep C with the new drugs they’ve had for it. And I was assured that if I agreed to accept the lungs with hep C, they would give me the medication to make sure that that was taken care of after.” (P05, male, lung) |
| “Expedient” pathway | “I cut my wait time in half by doing a Hep-C kidney transplant.” (P04, male, kidney) |
| “Mainly, like I said, once it was determined that it's something that's now curable, my thoughts really was I’d waited as long as I had, you know, I'd hate to run out of time just because we were eliminating things because of something that's not really a problem.” (P33, male, heart and kidney) | |
| “It was the most expedient way to put this behind me and move on with my life.” (P29, male, liver) “My feeling is that I want to get out of dialysis, and this is a way out.” (P06, male, kidney) |
|
| “Better than dying” | “It was actually no question but that I would immediately have hep C. So, there was no doubt about that. But having hep C was certainly one of the very many things sort of better than dying.” (P02, male, lung) “In my mind, it really isn’t a question of taking the hep C organ or not. If I hadn’t had that opportunity, and hopefully another one would’ve come along, but if another organ was not available, I would be in and out of the hospital. Each one was getting a little bit more severe, each infection, so God knows where I’d be, otherwise.” (P29, male, liver) |
| Challenges and concerns with HCV treatment | |
| HCV treatment cost | “We’re in a really good policy, so I don’t remember any issues at all with the insurance.” (P29, male, liver) |
| “No, because I had, you know, Medicare and the medical assistance. So, it was paid for.” (P20, female, lung) | |
| “They said you would have to pay for it, and I said ‘Well, put me on that list,’ and they said ‘Can you afford that?’ I said ‘It doesn't matter. I'll pay you over time.’” (P17, male, kidney) “There was also some issues with my insurance and them not wanting to cover the medication, so I was a little worried about that and confused.” (P32, male, heart) “The only things that I didn’t realize before I agreed to do that were the cost of the treatment, which is quite expensive, which I didn’t realize at the time… until our son told us.” (P26, male, lung) |
|
| Initiation of HCV medication | “Well, I didn't get Hep C right away. So, it was, like, probably a month maybe. Because after they found out I had it, then they had to get it through the insurance company and that was fun. Right. Exactly. Because the insurance company won't pay for something until–won't pay for it until you prove to them you actually have Hep C.” (P20, female, lung) “Just waiting for the medicine, you’re kind of uneasy just thinking maybe it's going to do something horrible before it gets here.” (P34, male, heart) |
| “Well, I knew I’m going to have to be on it and I know the order was written pretty quickly because it was as I was discharged, the drug was listed on my drug list. But it said pending insurance approval. So, I had my first video visit with the doctor and nurse and they said–I even–the day before, I got a call from my insurance, just a robocall telling me that they rejected it. So, I told them that I heard it was rejected. So, Lindsey immediately got on the phone, I guess, and Dr. Durant then had to explain. Insurance wants to get a cheaper drug or whatever. I don't know. So, that's why I didn’t start until 3 weeks later.” (P4, female, lung) | |
| Impact of HCV D+/R- transplants | |
| Relationships | “[The transplant] probably just actually brought everybody closer.” (P08, female, lung) “I would say it brought us closer, you know, I mean, we work together really well anyways but she really did a lot for me in terms of taking care of me, you know with meals and medications and phone calls that we had to make and that sort of thing. She's a very supportive partner.” (P18, male, kidney) |
| “And to this day. My wife was very scared. She basically put me in quarantine in my house. And it kind of–we also have–our two sons were in the house at the time, and it made things a little difficult for them, because she was over protective of me. And she didn’t want basically anyone around me.” (P32, male, heart) “Our love life was lacking for a while. Because she didn’t want to get involved, which is understandable.” (P32, male, heart) “I’m actually able to get up, walk around, and move and interact with my little brothers like a normal big brother would. I’m able to walk and play.” (P34, male, heart) |
|
| Disclosure and stigma | “You know, don’t go around with a billboard that says, ‘Hey, I have Hep C organs,’ but yeah, it's not something I’m hiding per se.” (P33, male, heart and kidney) |
| “I’ve never seen anybody have any big reaction to this. The kids. But they didn't have a big reaction to this when you said you're getting this kidney. Like, they didn't–They were, like, ‘Good.’ They were happy.” (P15, male, kidney) “I didn’t tell the world, for sure. Some friends that–knew that I had it. I’m not even sure they knew it was a Hep C. Some people who have had some issues, one in particular, have asked me about it, and, unfortunately, he can’t get it done. He's staying on dialysis. But, I mean, it wasn’t a handful of people outside the family that really were aware of it.” (P01, male, kidney) “Nobody I mentioned that to reacted one way or the other. It's just like, ‘Oh, okay.’ So, you know, if they had a reaction, they may not have wanted to show it, but, just–nobody even asked questions about it.” (P02, male, lung) |
|
| Overall experience | |
| “I mean, the staff was incredibly kind and informative and just made it very easy for me to, you know explained to me everything along the way. So it was a good experience.” (P18, male, kidney) | |
| “Overall, it went pretty smoothly. I was even surprised it happened–well, happened quickly and also, I left the hospital after 7 days.” (P24, female, lung) | |
| “Personally, I think that a lot more medical centers in this country should be hopping on that bandwagon and taking advantage of those things, because if they can cut down on wait times, that's really good stuff. People are dying out there. So, what's the harm?” (P04, male, kidney) “And, to be honest with you, I'm not so sure I would have made it to 6 years. I'm pretty certain I probably would have been one of those mortality statistics that died waiting for a kidney, if I hadn't gone for a transplant.” (P04, male, kidney) “I put full faith in the doctors, I knew they–you know, Johns Hopkins is a great hospital and medical center, and, you know, I put my faith in their hands. So, I mean, I had no worries at all.” (P11, male, liver) |
|
Reasons to Accept HCV D±/R− Transplants
Effectiveness of HCV Treatment
Most interviewees indicated that being informed that HCV treatment was effective and “safe” was the main reason to accept an HCV D+ organ. One interviewee said, “I knew that I was going to be treated” (P26, male, lung). A few interviewees said they chose to accept an HCV D+ organ after learning about positive results with previous HCV D+/R– transplant recipients from transplant team members. Other interviewees mentioned first-hand accounts of the effectiveness of the HCV medication from family members who were successfully treated for HCV.
“Expedient” Pathway
In addition to the effectiveness of HCV treatment, most interviewees noted reduced wait time for an organ as a reason for accepting an HCV D+ organ. Interviewees said that they would “be still waiting” (P14, male, heart) or that accepting an HCV D+ organ “cut wait time in half” (P04, male, kidney). Relatedly, many interviewees commented that a decline in their health and physical functioning before the transplant was a reason for accepting an HCV D+ organ. Some interviewees described an inability to perform everyday activities or “brutal” medical treatments such as dialysis before the transplant. Interviewees explained that “to turn down an organ” during their deteriorating health “because of a virus that is curable just didn't make any sense” (P22, female, lung).
“Better than Dying”
When faced with the possibility of death in 1 situation or receiving a transplant with a “curable” virus in another, interviewees explicitly and implicitly expressed that accepting an HCV D+/R– transplant was the “no question” option. In other words, many interviewees said that the alternative to not accepting an HCV D+ organ was death. Other interviewees highlighted survival, explaining that accepting the HCV D+/R– organ would give them a chance to live or “move on.” Some interviewees viewed HCV D+ organs as an “opportunity” to receive a life-saving transplant that may not come again.
Challenges and Concerns With HCV Treatment
HCV Treatment Cost
Several interviewees expressed concerns about the cost of HCV medication. For example, 1 interviewee mentioned that they were unaware of the medication's cost when they consented to the procedure. Moreover, interviewees felt concerned about the ability to afford the medication if they lost their insurance. Many interviewees indicated that their treatment was paid for in full through insurance or healthcare benefits such as TRICARE or Medicare. Some interviewees reported having a copay with their insurance. A few interviewees reported covering the entire cost of treatment. An interviewee who paid for their treatment out of pocket said, “I’m very fortunate that I could afford the medicine. I was told, and I knew that my chances of getting [coverage] is very low” (P06, male, kidney).
Initiation of HCV Medication
Most interviewees (62%) received HCV treatment within 1 month after their transplant (range, 1 day–2 months). They mentioned that the requirement for a laboratory viral load test confirming active HCV infection and negotiating with insurance companies affected the timing of HCV treatment. Some also said that delays with insurance approval raised concerns about the effectiveness of the HCV treatment when initiated later than intended. One interviewee expressed feeling “uneasy” about the potential effects of HCV while waiting to start treatment, “I didn’t know exactly what hepatitis C was going to do and also how it was going to affect my body” (P34, male, heart).
Impact of HCV D±/R− Transplants
Relationships
Some interviewees stated that their transplant positively affected their relationships with their significant others, noting that it “brought everybody closer.” However, a handful of interviewees shared that their family and partners had concerns about the risk of HCV transmission. As 1 interviewee said, “My wife was very scared. She basically put me in quarantine in my house” (P32, male, heart). Interviewees expressed concerns about the transmission of HCV and its effect on their physical and/or sexual interactions with their partners.
Disclosure and Stigma
Most interviewees reported that family members knew about their HCV D+/R– transplant, and several interviewees indicated that their spouses or family members were part of the decision-making process. Few interviewees indicated disclosing to their friends or “everybody.” Interviewees said they did not “hide” information about their transplant but did not widely publicize information. Most interviewees mentioned they did not experience stigma from people who knew they received an HCV D+ organ. Some believed that explaining that they were cured of HCV or receiving treatment to cure their HCV infection was a reason for not experiencing stigma, “No, because I just tell them I'm cured. Once you tell them you're cured, everybody settles down” (P04, male, kidney). Another interviewee explained that a possible reason why they did not experience stigma was that “most people don't even know enough information to be afraid or to understand what hepatitis C is and what it does” (P32, male, heart)
Overall Experience
Most interviewees had a “good experience” with the HCV D+/R– transplant. Most interviewees said they did not experience any side effects and that the HCV medication effectively treated their HCV. A few remarked about their quality of life, how the transplant provided them with “a second life,” and that they “haven’t felt this wonderful in a long time.” Some interviewees experienced setbacks, and most stated that the challenges occurred in the early stages of the posttransplant experience. Despite the challenges some interviewees experienced, none of them regretted accepting an HCV+ organ. The majority were grateful for the opportunity, and a few mentioned that they were still “alive” because of the transplant. Interviewees described receiving good care from the transplant team and staff at various stages (ie, initial consultation, surgery, and posttransplant) of the transplant process. Interviewees expressed having trust, confidence, and “faith” in the medical team and system. Many interviewees were glad to contribute to HCV D+ organ transplant research to benefit other potential recipients. They expressed that including HCV D+ donors in the donor pool increases access to donor organs.
DISCUSSION
This study assessed the experiences and perspectives of recipients without HCV who received organ transplants from donors with HCV. When deciding to accept an HCV D+ organ, interviewees were motivated by previous trial results of successful HCV D+/R− transplants and the effectiveness of DAA treatment, as well as perceived survival benefits, reduced wait time for a transplant, and improved health and physical functioning. The cost of HCV treatment was cited as a concern by interviewees, but this did not outweigh the perceived benefits of receiving the transplant. Although most interviewees could access and receive HCV treatment within a month, some interviewees experienced delays in securing insurance coverage, which delayed the initiation of treatment. Most interviewees did not experience stigma related to receipt of an HCV D+ organ, though disclosure was selective, and a few recipients mentioned family members had concerns about acquiring HCV. Overall, interviewees had a positive experience with the transplant, citing good care from the transplant and medical teams and positive posttransplant outcomes.
Only a few studies have assessed the perspectives and experiences of HCV D+/R− lung and kidney transplant recipients, all within clinical trials [4, 22, 23]. Our study examined the experiences and perspectives of HCV D+/R– recipients who received their transplants as clinical care and, in addition to lung and kidney, also included heart and liver transplant recipients. Because kidney transplant candidates can remain on dialysis and wait for an HCV D– organ, their reasons for accepting an HCV D+ organ may differ from those of non–kidney transplant candidates. Our study did not identify differences in the decision-making process among kidney compared with other organ recipients. Consistent with our findings, previous studies found that reasons to accept an HCV D+ organ included evidence of effective HCV treatment and shorter wait time for a transplant [22, 23, 30], as well as the negative impact of dialysis on health and desire to improve quality of life and life expectancy [22, 23]. Unlike previous studies, however, interviewees in our study were not motivated by donor age (ie, organ from a younger donor) when deciding to accept an HCV D+ organ. We also found similarities in the interviewees’ decision-making strategies between our study and previous studies [22, 23]. Our interviewees similarly weighed the benefits of accepting an HCV D+ organ against risks and concerns. Interviewees also reported overall positive transplant outcomes, having no regrets about receiving an HCV D+ organ, and not experiencing HCV-related stigma [4, 22, 23]. A potential reason why interviewees in our study did not report experiencing stigma was that they were selective in to whom they disclosed that they were recipients of an HCV D+ transplant.
By recruiting interviewees outside of a clinical trial, our study revealed perspectives on and experiences with treatment cost, which were not previously assessed in previous studies that involved trial participants [4, 22, 23]. Most interviewees could afford the treatment through insurance and public healthcare benefits, but some paid entirely out of pocket. In some cases, delayed insurance approval resulted in delayed access to HCV treatment, leading to interviewees being concerned about HCV's impact while waiting for treatment. A previous trial showed an increased incidence of de novo donor-specific antibodies, rejection rates, and high CMV and BK viremia rates following HCV D+/R− transplantation when treatment was initiated later (ie, a median of 76 days after transplant). Researchers hypothesized that these complications could be related to prolonged HCV because of delayed DAA initiation [7]. Our findings suggest that in addition to these medical concerns, patients may experience anxiety related to the cost of HCV treatment and issues securing insurance coverage may be potential barriers to HCV D+/R− transplantation for candidates. DAA treatment is expensive, and patients often experience challenges with insurance approval, especially before proof of active HCV infection [31]. With strong evidence of the effectiveness of DAAs and increasing evidence-based recommendations for early initiation of treatment after transplant [3, 6, 7, 10, 32], insurance programs should consider earlier approval and complete coverage for HCV treatment. In the meantime, transplant candidates should be meaningfully informed about these issues before accepting the organ(s). Transplant centers should counsel candidates on prescription coverage options, provide administrative assistance to candidates throughout the insurance approval process (eg, filing appeals, obtaining copay assistance), and identify any financial assistance programs.
This study has several strengths. This is the first study that has examined the experiences and perspectives of HCV D+/R− recipients outside of a clinical trial. Using this approach, we provide real-world insight into the psychosocial impact and challenges of HCV D+/R− transplants, such as HCV transmission risk, insurance coverage delays, and treatment costs. Our sample size was large enough to achieve saturation across multiple domains of this novel transplant process. Whereas in previous qualitative studies interviews were restricted to the perspectives and experiences of only kidney and lung transplant types [22, 23], our study captured heart and liver recipients’ responses, providing a more comprehensive understanding of HCV D+/R− transplant experiences.
Nevertheless, our study also has limitations. Recall bias may have limited interviewees’ reports of their experience with HCV D+/R− transplants. A few interviewees mentioned experiencing transplant complications, and this could have influenced their responses. We interviewed recipients at least 2 months posttransplant to capture recovery and postrecovery experiences better. By this time, most participants were on HCV treatment and their opinions may have been different than if they had been interviewed earlier. The time passed since transplant may have impacted the interviewees’ recall. Despite this potential bias, interviewees’ responses were consistent across all domains of the transplant process, suggesting a generally reliable recollection of events. Our sample may have also been affected by selection bias, with individuals that had a positive experience with the HCV D+/R− transplants opting to participate in the semistructured interviews. Nonetheless, our participation rate was high. Of the 32 eligible recipients contacted, only 5 declined and 2 could not be reached. Also, some interviewees in our study did report posttransplant challenges. Our study sample, which reflects our center's HCV D+/R− recipient population, was predominantly White, middle-aged men. Therefore, the findings may not be generalizable to other demographic groups. Future studies should examine differences in HCV D+/R− recipient experiences by gender, race, socioeconomic status, or education level. Our study did not assess the quality of the informed consent process before the transplant or the interviewee retention of information given during the consent process. Although previous studies have called for a more in-depth evaluation of the informed consent process for HCV D+/R− transplants [23], such an assessment has yet to be performed. Future studies should formally assess the informed consent process for patients approached for HCV D+/R− transplants, focusing on the consistency of information provided, the timing of engagement (eg, preconsent education), and information retention.
In conclusion, with DAA therapies, HCV D+/R− transplantation can increase the utilization of donor organs and decrease organ discard. Our study contributes to growing evidence of the safety and feasibility of this practice by illustrating interviewees’ overall positive perspectives and experiences related to HCV D+/R− transplantation across multiple organ types. It also identifies areas of potential anxiety, including HCV transmission risk, treatment costs, and delays. As such, pretransplant patient-centered communication and education about the possible logistical, financial, or other challenges regarding HCV D+/R− transplants may alleviate pretransplant patient concerns and improve posttransplant patient experiences.
Contributor Information
Karen B Vanterpool, Department of Surgery, NYU Grossman School of Medicine, New York, New York, USA.
Kadiatou Diallo, Department of Surgery, NYU Grossman School of Medicine, New York, New York, USA.
Ellie Kim, Department of Surgery, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Sarah E Van Pilsum Rasmussen, Department of Surgery, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Morgan A Johnson, Department of Surgery, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Zachary Predmore, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
Janetta Brundage, Department of Surgery, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Brittany Barnaba, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Niraj Desai, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Macey L Levan, Department of Surgery, NYU Grossman School of Medicine, New York, New York, USA; Department of Surgery, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA; Department of Population Health, NYU Grossman School of Medicine, New York, New York, USA.
Hannah C Sung, Department of Surgery, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Olivia Kates, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA; Department of Population Health, NYU Grossman School of Medicine, New York, New York, USA.
Jeremy Sugarman, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA; Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA; Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland, USA.
Christine M Durand, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Notes
Author contributions . K. B. V. and K. D. led the data analysis and drafted the article. E. K. supported data analysis and revised the article. S. E. V. P. R led the data collection and recruitment efforts, participated in the research design, and revised the article. M. A. J. supported data analysis. Z. P. participated in research design and data collection and revised the article. B. B. supported recruitment efforts and clinical coordination and revised the article. N. D. supported research design and data analysis and helped revise the article. M. L. L. supported data collection and reviewed and revised the article. H. S., O. K., and J. B. reviewed and revised the article. C. M. D. and J. S. led the research design, supported data collection and analysis, and revised the article.
Acknowledgments . The authors are grateful to the interviewees in this study for sharing their experiences with HCV D+/R− transplants.
Financial support. C. M. D. is funded by the National Institute of Allergy and Infectious Diseases [U01AI157931].
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