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A Provider Perspective of Psychosocial Predictors of Upper-Extremity Vascularized Composite Allotransplantation Success

      Purpose

      We performed a qualitative study to understand the psychosocial factors associated with success in upper-extremity vascularized composite allotransplantation from the perspective of transplant providers.

      Methods

      We recruited 13 providers actively involved in upper-extremity vascularized composite allotransplantation. Participants included physicians, nurses, social workers, occupational therapists, and research administrators. We conducted semistructured face-to-face focus group interviews using a guide that explored providers’ perceptions of qualities contributing to transplant outcome. Topics included social support networks and their influence on recovery, barriers to treatment compliance and successful posttransplant rehabilitation, and the process of setting patients’ expectations. We performed a thematic analysis that produced a list of themes, subthemes, and proposed hypotheses explaining how the themes related to the study’s guiding questions.

      Results

      The analysis identified numerous factors that contribute to transplant success: (1) recipients’ prior experiences modify their ability to cope and adapt after transplantation, (2) behaviors and characteristics such as positivity influence candidacy and may be predictive of successful outcomes, and (3) social support is essential for improved function and compliance. The provider care team cited difficulty in predicting recipient compliance and in setting realistic expectations.

      Conclusions

      Motivated recipients with developed coping and resiliency, a positive attitude, and stable, physically-able caregivers are perceived by providers to have greater success after transplantation.

      Clinical Relevance

      Findings from this work may help providers determine optimal candidates for upper-extremity vascularized composite allotransplantation.

      Key words

      Since the advent of upper-extremity vascularized composite allotransplantation (VCA) in 1998, extensive research has been performed on surgical technique, immunosuppression, and transplant survival.
      • Dubernard J.M.
      • Owen E.
      • Herzberg G.
      • et al.
      Human hand allograft: report on first 6 months.
      • Kanitakis J.
      • Jullien D.
      • Petruzzo P.
      • et al.
      Clinicopathologic features of graft rejection of the first human hand allograft.
      • Foroohar A.
      • Elliot R.M.
      • Kim T.W.
      • Breidenbach W.
      • Shaked A.
      • Levin L.S.
      The history and evolution of hand transplantation.
      • Cavadas P.C.
      • Ibáñez J.
      • Thione A.
      • Alfaro L.
      Bilateral trans-humeral arm transplantation: result at 2 years.
      Despite consensus on the importance of identifying psychosocial factors, little work has been performed to characterize these factors and examine their associations with transplant outcomes.
      • Kiwanuka H.
      • Aycart M.A.
      • Bueno E.M.
      • Pomahac B.
      • Talbot S.G.
      Experience with patient referrals for upper extremity transplantation at a U.S. academic medical center.
      ,
      • Singh M.
      • Oser M.
      • Zinser J.
      • et al.
      Psychosocial outcomes after bilateral hand transplantation.
      Because the role of psychosocial factors in VCA outcome has received little formal investigation, we believed that a qualitative approach would be most appropriate because it would generate hypotheses that can then be tested using more deterministic study designs.
      The VCA community has underscored the importance of psychosocial evaluation and recognition of its contribution to patient outcomes.
      • Jowsey-Gregoire S.G.
      • Kumnig M.
      • Morelon E.
      • Moreno E.
      • Petruzzo P.
      • Seulin C.
      The Chauvet 2014 meeting report: psychiatric and psychosocial evaluation and outcomes of upper extremity grafted patients.
      • Kumnig M.
      • Jowsey S.G.
      • Moreno E.
      • Brandacher G.
      • Azari K.
      • Rumpold G.
      An overview of psychosocial assessment procedures in reconstructive hand transplantation.
      • Kumnig M.
      • Jowsey S.G.
      • Rumpold G.
      • et al.
      The psychological assessment of candidates for reconstructive hand transplantation.
      The current study aimed to formalize some of the subjective findings and lay the groundwork for future evaluation instruments.
      Our previous work has focused on VCA recipients.
      • Kinsley S.E.
      • Lenhard N.K.
      • Lape E.C.
      • et al.
      Perceived success in upper-extremity vascularized composite allotransplantation: a qualitative study.
      Through qualitative analysis and interviews with upper-extremity VCA recipients and their primary caregivers, Kinsley et al
      • Kinsley S.E.
      • Lenhard N.K.
      • Lape E.C.
      • et al.
      Perceived success in upper-extremity vascularized composite allotransplantation: a qualitative study.
      discussed that “transplant recipients with a mature, resilient, positive attitude, strong social support, and deep understanding of posttransplant challenges will have greater surgical success.” To support this work, we performed a complementary qualitative study of VCA providers, with the aim of identifying psychosocial features of VCA recipients that influence transplant outcome from the providers’ perspective.

      Methods

      Participants

      Participants were recruited from clinical staff involved in the care of VCA recipients at Brigham and Women’s Hospital. Participants included physicians, nurses, social workers, occupational therapists, and research administrators. All those who were able to participate were included. All participants received an introductory email requesting participation in focus group discussions and provided written consent. All study activities were approved by the Institutional Review Board of Brigham and Women’s Hospital.

      Focus groups

      Thirteen participants took part in 4 focus group discussions. A psychiatrist and psychologist conducted discussions using a semistructured moderators’ guide, created through collaboration among the center’s transplant surgery team, psychiatrist, and psychologists. Those involved in the creation of the moderators’ guide were not participants in the focus group discussions. The discussions consisted of open-ended questions (Table 1) on topics including providers’ perceptions of personal qualities contributing to transplant outcome, social support networks and their influence on recovery, barriers to treatment compliance and successful posttransplant rehabilitation, and the process of setting patients’ expectations. The discussions were recorded and transcribed verbatim.
      Table 1VCA Psychosocial Predictors of Outcome: Focus Group Interview Template
      We are studying the process and the outcomes of transplants, and our long-term goal is to maximize the benefits for patients undergoing these procedures. We know that individuals differ quite a bit in their backgrounds and in how they approach transplants, and we know that many different factors have an influence on how people do during and after transplantation. We are especially interested in your experience of what were the most important positive factors (that helped to have a successful outcome) and the most important negative factors (challenges and difficulties that could have interfered with the process and led to an unsuccessful outcome).
      • 1.
        Tell us about pretransplantation in the following areas for patients:
        • a.
          Physical health and functioning
        • b.
          Pain
        • c.
          Psychological
        • d.
          Social
        • e.
          Quality of life
        • f.
          What qualities are helpful/adaptive during the transplant process?
        • g.
          What qualities are unhelpful/maladaptive during the transplant process?
      • 2.
        Transplant preparation experience
        • a.
          How was the quality of information about the transplant distributed?
        • b.
          How are expectations of transplant set?
        • c.
          What makes the preparation stage easier?
        • d.
          What makes the preparation stage harder?
        • e.
          In your opinion, what makes a transplant successful/unsuccessful?
        • f.
          How can help patients prepare differently?
        • g.
          How would you advise someone in that situation now?
      Specific factors to ask about during the preparation phase: anxiety, depression, post-traumatic stress disorder (PTSD), attitude/beliefs, social environment, compliance, medications, pain, substance use/abuse, and medical comorbidities.
      • 3.
        Posttransplant rehabilitation
        • a.
          What is the experience like?
        • b.
          How are expectations set?
        • c.
          How prepared are the patients for the rehabilitation period?
        • d.
          What are the biggest challenges during the rehabilitation period after the transplant?
        • e.
          What is most helpful during the rehabilitation period after the transplant?
        • f.
          During this period, do patients have any regrets about undergoing the transplant?
        • g.
          In your opinion, what makes for a successful/unsuccessful rehabilitation?
        • h.
          If you could prepare people differently, what would you do during the rehabilitation period?
        • i.
          How would you advise someone in that situation now?
      Specific factors to ask about during the rehabilitation phase: anxiety, depression, post-traumatic stress disorder (PTSD), attitude/beliefs, social environment, compliance, medications, pain, substance use/abuse, and medical comorbidities.
      • 4.
        Posttransplant functioning
        • a.
          Overall, compare the life pre- to posttransplantation
        • b.
          What can patients do now that they couldn’t do then?
        • c.
          What is more difficult, or worse, since the transplant?
        • d.
          Compare the physical health and function of patients before and after transplant
        • e.
          Compare the pain before and after transplant
        • f.
          Compare the psychological state (mood, anxiety, beliefs, and personality) before and after transplant
        • g.
          Compare the social life before and after transplant
        • h.
          Compare the substance use before and after transplant
        • i.
          Compare the overall quality of life before and after transplant
        • j.
          Compare the relationships between patients and healthcare providers before and after transplant
        • k.
          We know that transplant outcomes can be very different from person to person. What do you think makes people more likely to have a good long-term outcome?
        • l.
          What makes them more likely to have a less successful long-term outcome?
        • m.
          If you could change one thing about the current transplant process, in order to maximize the likelihood that a patient does well, what would you change?
      • 5.
        Open Discussion
      • 6.
        Open Discussion – with camera off
      • 7.
        Discuss timing of follow-up phone call

      Thematic analysis

      We analyzed the transcript data according to thematic analysis, a commonly-used method in qualitative research outlined by Braun and Clarke.
      • Braun V.
      • Clarke V.
      Using thematic analysis in psychology.
      Two investigators created a coding scheme. Codes (word or short phrases) were used to mark basic units of transcript data that related meaningfully to the study’s guiding questions: “What factors, perceived by the provider care team, influence the success of VCA?” and “What factors facilitate or hinder the rehabilitation process for recipients?” Codes were applied to all transcripts.
      In the second phase, the investigators identified themes. The themes express broader patterns, often by describing relationships between codes and their connections to the study’s guiding questions.
      • Braun V.
      • Clarke V.
      Using thematic analysis in psychology.
      We created a thematic scheme: a list of themes, subthemes, and hypotheses (short statements) about factors influencing transplant outcomes. Transcript excerpts supporting each theme were organized using qualitative data analysis software (Dedoose). A thematic map was developed to depict the relationships between themes (Fig. 1). Investigators reviewed the thematic scheme to ensure that each theme reflected the associated transcript data and was distinct from the other themes. The final thematic scheme and map were approved by all investigators.

      Results

      Participants

      Participants included 13 upper-extremity VCA care team providers: 4 transplant surgeons, 2 transplant physicians, 2 nurses, 3 occupational therapists, 1 social worker, and 1 research administrator. These participants were not involved in the development of this study or the moderators’ guide. Six participants were female and 7 were male.

      Results of thematic analysis

      We identified 21 subthemes (Fig. 1). Below, we outline the headings (I-V) and themes (capital letters), along with select associated hypotheses suggested by the transcript data and supporting quotes. A comprehensive list can be found in Table E1 (available online on the Journal’s website at www.jhandsurg.org).

      I. Patient background and experience

      Transplant recipients’ prior experiences shape their experience after transplantation and may stress the need for additional support in recipients with history of mental health issues and/or prior substance use.

      A. Prior experience with physical and emotional trauma

      Recipients’ prior experiences with trauma, including limb loss, provided them with physical and emotional coping mechanisms that allowed them to have more success after transplantation.“[prior trauma]… can tell you a lot whether they can adjust to some unpredictability after transplant.” (4)“… resilience and being able to adapt to their injury seem to be predictive of more successful outcomes afterwards.” (5)

      B, C. Mental health challenges and substance use

      The trauma of transplant surgery can prompt a resurgence of mental illness. Providers did not believe that this was a disqualifying factor, but rather it signaled the need for additional support.“… there’s always a concern that [anxiety, depression, PTSD] will resurface if things aren’t going well.” (8)
      Providers expressed uncertainty regarding candidacy for recipients with history of substance use. Active use candidates are disqualified; nevertheless, those with stable, remote history are required to follow the philosophy of the transplant institution.

      II. Patient characteristics

      Transplant success cannot be linked to a single characteristic. Recipients with successful outcomes exhibit several promising traits with a unique combination of individual traits that predict success coined “the X factor.”“[The candidate] should be like an astronaut… They should not be common. This should be a rare operation, where you have exactly the right person with the exact right combination of things.” (14)

      A. Motivation

      Providers noted that motivation is the key to success as demonstrated in the transplant recipients’ commitment to rehabilitation. The value of hands versus prosthetics within the society serves as motivation for some recipients.“… the first thing is motivation… My sense is that we’re helping them out, but it’s really their adventure, their story.” (17)“People who want to work, want to travel, want to do things … they just do it.” (18)“.... from a functional perspective, they’re desiring to… fit into society.” (22)

      B. Capacity to incorporate new information

      The ability to comprehend the magnitude and gravity of transplantation is essential for both provider and recipient.“… the educational piece of it is critical, and that requires competence on both sides. It requires competence and sensitivity on the providers’ side, but it requires a receptive patient.” (24)Apprehension and skepticism reflect recipients’ understanding of the commitment to transplantation and expectations.“They should be a little bit like a deer in headlights… that really lets me know that they understand the gravity of what we’re talking about… they need to be appropriately skeptical.” (26)The volume of information presented by the providers was believed to be a potential barrier to comprehension and the recipient’s ability to absorb key information. Cognitive deficits from prior trauma or illness can also hinder the recipient’s comprehension.“… if there are any cognitive issues… it just makes the amount of learning and memory that’s required and the ability to adapt [very hard].” (31)

      C. Resilience

      Recovery after transplantation includes periods of decreased function and setbacks. Recipients need to cope and adapt to those challenges to achieve improved functional status.“People that are more resilient tend to withstand the highs and lows better because anybody does well when things are good. It’s a lot harder to cope with the lows when you have problems or complications.” (34)

      D. Outlook and expectations

      Recipients’ expectations correlate with posttransplant function. Setting lower expectations may lead to greater satisfaction. Providers believed that recipients with a negative outlook are unsatisfied with their functional result, whereas recipients with a positive outlook are more satisfied despite sometimes objectively less optimal results.“… expectations were set pretty low …[and] objectively have marginal functional outcomes but are ecstatic. …Patients who functionally … have very good metrics, but are miserable and they hate their results.” (35)

      E. Positivity

      Providers believed that optimistic patients have better adaptability, adjustment, and coping after transplantation.“… if they come into the assessment a happy person… they’re going to adapt, adjust, and cope in any sort of situation… [with setbacks and complications, they will say] ‘okay, we’ll get through it.’” (36)

      F. Perspective on trade-off between immunosuppression and function

      Transplant recipients must be accepting of the complications and risks associated with lifelong immunosuppression. Providers believed that a key factor in patients’ decisions is the trade-off between the risks of immunosuppression and the prospect of improved functional ability after transplantation.“… the patients need to feel the transplant provided the value that they were hoping for.” (38)

      G. Psychological acceptance of transplant

      Transplant recipients must accept benefiting from a person’s death. Additional support is needed for recipients to manage feelings of gratitude and guilt.“… there’s a huge psychological component to this. It’s dealing with the fact that you’re benefitting from the misfortune of another human being.” (39)

      H. Impulsiveness

      An appropriate level of confidence is needed to accept the risks of transplantation; however, too much impulsiveness can limit compliance.“…there’s no way to be impulsive in going through these things. Impulsiveness is a detriment that I saw.” (41)

      I. Attitude toward publicity

      Both the provider and the recipient can be influenced by media attention. Recipients can find positive support but may also become attention-seeking. Providers discussed the importance of treating transplant recipients with the same level of care as nontransplant patients.“It’s positive attention, probably when they’re so used to having negative attention.” (8)“… some patients … have gravitated towards that attention and they have a hard time when it starts to go away.” (45)“… [as a] caregiver… I have to keep myself in check because … everybody matters.” (46)

      J. Adaptability

      Providers evaluate the transplant recipient’s ability to adapt and cope with previous trauma and functional limitations, which can predict how they will meet with posttransplant challenges.“… [they] are the survivors… the go-getters… the people who are not fazed….That’s gonna drive them forward.” (49)

      III. Patient behaviors

      The behavior of transplant recipients influences every aspect of transplantation and can alter their candidacy.

      A. Pleasing the care team

      Providers acknowledge that the transplant recipient may feel a need to please the care team. This can be an attempt to improve their candidacy or to meet functional expectations after transplantation. Providers need a modicum of skepticism to recognize these behaviors.“… [transplant recipients] start to give overly rosy reports… because they feel like they have an obligation [to do well].” (50)“[A transplant candidate] was saying the same words [echoing another provider] like she understood, but what she wanted … was something totally different.” (51)

      B. Taking an active role

      Providers view candidates rising to preoperative challenges and assuming responsibility in posttransplant recovery as having more successful outcomes.“[Transplant candidates] had certain requirements they had to comply with or things they had to take care of in their lives or medical situation [before transplantation].” (53)

      C. Responding to selection process challenges

      Providers evaluate transplant candidate’s behavior during the pretransplant evaluation process as an indicator of behavior after transplantation and compliance with rehabilitation.“… every patient … goes through screening for a number of months at a minimum. … There are a variety of requirements that… gauge their compliance.” (56)

      IV. Social support and resources

      Stable, committed, physically-able social support is deemed essential to posttransplant success. The recipients’ caregiver and/or social support network have their own unique relationship with the providers. Those that are trusted by the recipient and provider team may have an improved transplant experience, independent of functional success.

      A. Strength of support

      Providers believed that recipients with committed, trusted, social support had greater posttransplant success and compliance with rehabilitation.“You need to have somebody who is the main one or two people, who are really there, who are very close, who know the answers to the questions even before the patient does.” (59)“Those are people that are rock solid. That they trust. The patient trusts. Whether or not we trust them, but the patient needs to trust them. They need rocks in their life.” (60)Physical capability of the social support is necessary when the transplant recipient’s ability and function is decreased after transplantation.“… somebody that can do physical work, and transport this [recipient], you know every day! For months. And that is really… exhausting.” (62)A larger network of social support, outside of one primary caregiver, is recommended to ensure recipients have adequate care.“If they’re by themselves, this is way too big of a weight for one person to carry, and I think it dooms them to failure.” (63)

      B. Financial stability

      Baseline financial resources are necessary for recipients to cover costs associated with medications, travel, and posttransplant protocol requirements.“They need to have reasonable financial means … there should never be a financial hurdle to them getting to … the emergency department if they have an issue.” (67)

      V. Care team

      The provider care team is responsible for selecting appropriate candidates who will have a successful posttransplant outcome. Providers face difficulties in predicting recipient compliance, coordinating care, and setting expectations.

      A. Challenges of predicting compliance

      Compliance is paramount to posttransplant rehabilitation and functional success. Predicting compliance with immunosuppressive medications, hand therapy, and adherence to follow-up is difficult for the providers. Providers assess the candidate’s social support and presentation during preoperative evaluations and cite their own bias as contributing to interpretation of compliance.“in assessing compliance, there are objective and subjective parameters…. [But it] is challenging.” (70)

      B. Distance from care team

      Challenges in care coordination can arise when transplant recipients live far from the transplant center.“It is really hard to manage a patient that’s 2,000 miles away, and when there are financial and compliance issues on top of the distance, it gets really complicated.” (75)Additionally, local care providers may be unfamiliar and uncomfortable managing the medical complexities of transplant recipients. This can lead to diagnostic uncertainty and tension among local providers and recipients.“…you can understand it from the local center’s point of view. This is something they’re being asked to follow up on, but they didn’t really have a hand in setting up.” (77)

      C. Providers’ ability to shape expectations

      Setting appropriate, realistic expectations of obstacles and challenges for transplant recipients is critical to achieve success after transplantation. Ultimately, there is no way to fully prepare a candidate, and knowledge is gained only through experience.“… there’s really no way for them to grasp it until it’s actually happening.” (82)Providers emphasized the negatives of transplantation more than positives to ensure that the recipients understand the gravity of their decision. Recipients were believed to focus heavily on the positives of transplant, preventing them from developing realistic expectations.“I think we … draw a picture that is more pessimistic than we actually think … because we want to be certain that the patient understands all potential side effects.” (84)

      Discussion

      This research was performed through semistructured focus group interviews of providers involved with upper-extremity VCA to understand the factors that the providers perceived as leading to successful outcomes. While Kinsley et al
      • Kinsley S.E.
      • Lenhard N.K.
      • Lape E.C.
      • et al.
      Perceived success in upper-extremity vascularized composite allotransplantation: a qualitative study.
      discuss factors perceived by transplant recipients and their primary caregivers as predictive, we believed that examining the factors that predict outcomes from the providers’ perspective was similarly important to give a broad view of the topic and to better understand those factors that differ between patient and provider perceptions. Other psychosocial VCA research is focused on the standardization of psychosocial assessments, candidacy screening, quality of life, outcome satisfaction, and improvements in body image.
      • Kiwanuka H.
      • Aycart M.A.
      • Bueno E.M.
      • Pomahac B.
      • Talbot S.G.
      Experience with patient referrals for upper extremity transplantation at a U.S. academic medical center.
      ,
      • Singh M.
      • Oser M.
      • Zinser J.
      • et al.
      Psychosocial outcomes after bilateral hand transplantation.
      ,
      • Kumnig M.
      • Jowsey S.G.
      • Moreno E.
      • Brandacher G.
      • Azari K.
      • Rumpold G.
      An overview of psychosocial assessment procedures in reconstructive hand transplantation.
      ,
      • Kumnig M.
      • Jowsey S.G.
      • Rumpold G.
      • et al.
      The psychological assessment of candidates for reconstructive hand transplantation.
      ,
      • Jowsey-Gregoire S.
      • Kumnig M.
      Standardizing psychosocial assessment for vascularized composite allotransplantation.
      ,
      • Hautz T.
      • Engelhardt T.O.
      • Weissenbacher A.
      • et al.
      World experience after more than a decade of clinical hand transplantation: update on the Innsbruck program.
      This qualitative study examined open-ended responses of providers involved in upper-extremity VCA to the numerous aspects of transplantation predictive of outcomes. The validated, formal, and protocolized methods of Braun and Clarke
      • Braun V.
      • Clarke V.
      Using thematic analysis in psychology.
      were used to systematically examine responses, ensuring the methodical capture of the data and complete analysis. In this way, we believe that we can build on the work of Kinsley et al
      • Kinsley S.E.
      • Lenhard N.K.
      • Lape E.C.
      • et al.
      Perceived success in upper-extremity vascularized composite allotransplantation: a qualitative study.
      and subjective opinions within the VCA literature.
      Providers suggested a range of factors relating to VCA success: (1) recipient’s prior experience is believed to determine their ability to cope and adapt after transplantation, (2) behaviors and characteristics influence candidacy and can be predictive of successful outcomes, and (3) social support is essential for improved function and compliance. The provider care team has the momentous task of determining candidacy and cited difficulty in predicting recipient compliance and in setting realistic expectations.
      Recipients with characteristics of motivation, resilience, adaptability, positive perspective and outlook, and a limited degree of impulsiveness are thought to be likely to have greater success after transplantation. Providers recognized their own bias in evaluating candidates with combinations of these unique characteristics, coining it as the “X factor.” The transplant candidates with these characteristics will adapt to the rigorous selection process and will be better prepared for the challenges after transplantation. Similarly, these characteristics are demonstrated by recipients taking an active role in their care. Providers should maintain a level of caution and skepticism because candidates may unintentionally attempt to please the care team to improve their candidacy.
      As this was a qualitative study, our results should be seen as hypothesis-generating. If these hypotheses are confirmed in other studies, they would point toward success in positive, motivated recipients with coping and resilience developed through prior experiences; recipients who demonstrate an understanding of the gravity of transplantation; and recipients who have available, stable, and physically-capable caregivers. If confirmed, this research could assist in the selection of transplant candidates. Additionally, these data suggest the importance of modifiable factors such as increasing support for mental health, proximity to the transplant institution, and confirmation of stable caregivers. Importantly, these data are a starting point for evaluating psychosocial variables in surgical patients. Our belief is that further instruments can be developed through the collaboration of various national and international organizations.
      More generally, these findings may be broadly applicable to patients experiencing other non-transplant upper-extremity trauma or disability for whom psychosocial variables may play an equally important role.
      We recognize several limitations, including the small sample of interviewees. This research would benefit from broader perspectives with repeated study worldwide. Although we included providers from many backgrounds, future investigations would benefit from including more providers, wider perspectives, and additional allied health professionals. Further discussion on defining transplant success is indicated. Providers often refer to transplant failure as loss of transplant, whereas recipients may view limitations in function as failure. We also recognize the inability to account for biases for or against transplantation, in general, by those interviewed, and the inability to account for unconscious biases toward our patients and providers.
      This qualitative work was performed through methodological and protocolized analysis of interviews with upper-extremity VCA providers and demonstrates factors associated with perceived success. Our findings suggest that motivated recipients with developed coping and resilience; a positive attitude; and stable, physically-able caregivers will have greater success with upper-extremity vascularized allotransplantation.

      Acknowledgments

      This work was supported by the Office of the Assistant Secretary of Defense for Health Affairs under the Reconstructive Transplant Research Programe Qualitative Research Award under Award No. W81XWH-17-1-0400. Opinions, interpretations, conclusions, and recommendations are those of the authors and are not necessarily endorsed by the Department of Defense.

      Appendix A

      Table E1Comprehensive Supporting Quotes
      Theme or SubthemeHypothesesSupporting Text From Transcripts
      I. Patient Background and Experience
      A. Prior experience with physical and emotional traumaPatients’ established physical and emotional coping mechanisms from prior experiences with trauma, including limb loss, help prepare them for the limitations that they encounter after transplantation.“I think they are, depending on the time distance to the accident, somewhat adapted to their situation. Adapted to their limitations and have developed coping mechanisms.” (1)

      “I mean some of them are very even-handed I think. I think you know maybe the two things I think make a difference was… how they adapted to their limitations. Because they need to re-adapt. So people who have been able to adapt, and they could have been ostracized, but they adapted somehow.” (2)

      “On the other hand, I do feel like many of the people we see are truly exceptional, who are the ones who have, in many ways, adapted the best to their circumstances, and are looking for something different or even, in some ways, better for them. They’re the ones who are the survivors, who are the go-getters, who are the people who are not sort of phased. Or they’ve been phased but they’ve gotten over it and have decided they have something that’s gonna drive them forward.” (3)

      “I feel like it’s an important piece, because each person who would call or come by for an evaluation of this type of surgery has been through a trauma even if it was due to an infection, like the two you’ve interviewed and the third one – it was not an infection but that in of itself is a trauma. So, I guess I would lean more towards have they addressed the psychological emotional pieces of having been through trauma. Some people are gonna say “well the hospital that I was being treated at made me see a psychiatrist when I was leaving the ICU and that was fine and now I’m fine. But that’s not the same as really sitting down and admitting that this was traumatic.” (4)
      Prior trauma experience can help patients adopt realistic expectations regarding transplantion.“Sometimes the function just doesn’t go to where they secretly hoped for. So that’s where I think that resilience and being able to adapt to their injury seem to be predictive of more successful outcomes afterwards.” (5)

      “And I think that’s where your role as a psychiatrist and social work, like, where we do ask a whole section about history of trauma to find out how did the cope before. It’s not that that would take you off the list, but how did you deal with it when your husband died at a young age or whatever it might be that they had to cope with recently or in the past and that can you tell you a lot whether they can adjust to some unpredictability after transplant.” (6)
      Experience with painPatients having the experience of living with pain tend to have a greater pain tolerance.“I find that these people have already lived with a lot of pain you know? And so in terms of… I think the face transplants are just a whole different group of people, so I kind of group that in a whole different situation than the arm transplants because the people that I’ve met from the arm transplants were all very active and involved and had been either through other rehab stuff before they came in, they were all extremely driven themselves. I found their tolerance for pain was actually pretty good.” (7)
      B. Mental health challengesThe trauma of surgery can prompt a resurgence of mental illness, which causes concern for some providers.“A lot of them have things that they’ve dealt with in the past even if they don’t have current issues from anxiety or depression. PTSD. They’ve gone through it. And there’s always a concern that will resurface if things aren’t going well.” (8)
      Providers are willing to work through mental health issues after transplantation and do not view well-managed mental illness as a disqualifying factor.“I think depression’s a big one. Because you have someone that’s frustrated, often times functionally or socially. And you have to screen them for depression. And so I think we do that. We screen them for depression certainly but I think that you wanna make certain that you also look at that in a weighted fashion because if you’re not able to participate in social activities because of your condition, you’re not able to complete the activities of daily living, I think that you’ll screen positive on a depression scale. Because your function is impaired. So you have to sort of balance out the type of depression that leads to self-harm which is sometimes how the patients got there or the type of depression that is more a functional deficit of being unable to complete your daily life.” (9)

      “If someone’s well managed with bipolar disorder or someone’s depression is well treated I don’t think that’s a counter-indication for any other transplants. I don’t think it should be something that we would necessarily or should necessarily use to exclude people.” (10)
      C. Substance abuseAlthough providers expressed uncertainty regarding how to handle patients with prior substance abuse, it was not regarded as a disqualifying factor.“I mean you have to make sure they’re clean to be eligible right. And then post-transplant, I haven’t noticed anybody that I know of has been an issue.” (11)

      “I think most patients with active issues get screened out. This issues… what would you do with a patient with a history five years ago, ten years ago, substance abuse or even two years ago. Two years ago but they’re doing fine do you screen them out? That’s where I think the… it depends on the philosophy of the individual center but I think so few patients they’re trying to get somewhere we should be more inclusive rather than… (unintelligible) But I think it’s better to in my opinion be inclusive and see what you can learn from them rather than be exclusive and wait for later the perfect patient that never shows up.” (12)
      II. Patient Characteristics
      “X factor”Transplant patients with good outcomes exhibit several promising traits before the transplant, but their success can rarely be tied to a single characteristic. Rather, there is something about the unique combination of individual traits that predicts success.“It’s a little bit of an x-factor.... Like Subject 3. First time we met that guy, he just had a strength of soul. It was immediately apparent. And he was still pretty sick at that point. He was still recovering with acute injuries and the acute amputation, but you very quickly got a sense that this guy had a global… Like he got it. He understood. He was not showboating, he was not trying to get his name in the news. He wanted a better life than what he was looking at with regard to being a quad-amputee. And was suitably skeptical, you know, asked very good questions. Did not kind of sign up on the first day he was here. You know, it was a bit of a courtship, and at the end of the day, that’s the person you want. But all of the things that fall… like breaking that down in a granular level? It’s hard to actually identify all the individual factors that figure into that. But it’s one of those things where you meet those people and you know like instantly.” (13)

      “The metaphor that I set up in my mind when I’m meeting a transplant patient candidate, is that they should be like an astronaut. They should have, to carry the metaphor further, the right stuff. They should actually be this pretty unique combination of traits. They should not be common. Like I don’t think that we should be doing transplants on any more than one or two people maybe a year. This should be a rare operation, where you have exactly the right person with the exact right combination of things.” (14)
      A perfect candidate is rare. Rather, providers are committed to trying to improve promising candidates.“I think people, I mean generally speaking, that people are just not good candidates, and I think it’s easy to spot a lot of them. I think you can always make somebody better.” (15)

      “I’m a big proponent of let’s accept that there will be something whether it’s let’s accept that some patients will become noncompliant, will ask to have the hands removed, will have issues that we have to deal with. But that’s when you can look back and really sort of take time still early to see how you select the patients the best. (unintelligible) perfect patients, one in one hundred, one in one thousand. But you could also get ten and you have five that didn’t work out with (unintelligible) and you just can’t make any scientific conclusion. In my opinion I’m very much in favor of improving the effort of the ability to help patients. Accept that nobody is perfect and give them the chance that maybe we were wrong about them in some ways.” (16)
      A. MotivationA perfect candidate is rare. Rather, providers are committed to trying to improve promising candidates.“I think people, I mean generally speaking, that people are just not good candidates, and I think it’s easy to spot a lot of them. I think you can always make somebody better.” (17)

      “I’m a big proponent of let’s accept that there will be something whether it’s let’s accept that some patients will become noncompliant, will ask to have the hands removed, will have issues that we have to deal with. But that’s when you can look back and really sort of take time still early to see how you select the patients the best. (unintelligible) perfect patients, one in one hundred, one in one thousand. But you could also get ten and you have five that didn’t work out with (unintelligible) and you just can’t make any scientific conclusion. In my opinion I’m very much in favor of improving the effort of the ability to help patients. Accept that nobody is perfect and give them the chance that maybe we were wrong about them in some ways.” (18)

      “The capacity to adapt is an important trait and I think there were things they … Who are they doing this for? Is it for show? Is it for somebody? You said you know it’s family, children, grandchildren – that’s a big motivator.” (19)

      “And there’s also a sense of redemption for some of them. Doing this they know they are opening the doors to other people.” (20)
      Valuation of handThe social benefits of a hand over a prosthetic serves as motivation for some patients.“With that motivation and that, kind of like that ideal to, not to just do the threshold of transplant but to try to be normal. They’re not normal because of their face or limb loss. They cannot function and they see transplantation as an answer to their limitation. Because it’s not the answer—some people are happy with their prostheses. They say thank you, no thank you, then they move on. Some other people say no I really want a hand or I really need these too.” (21)

      “I think that from a functional perspective, they’re desiring to sort of fit into society… I think the functional side on the limb transplant some of the activities of daily living, it’s the frustration with compensation. Or lack of ability to be able to do activities of daily living.” (22)
      B. Capacity to incorporate new informationPatients need to be receptive to and be able to incorporate and understand new information about the transplant.“So I think somebody who has attained an educational level where they have a deeper understanding of what’s going on. I think that’s always useful because it’s not what we deal with.” (23)

      “I think the educational piece of it is critical, and that requires competence on both sides. It requires competence and sensitivity on the provider’s side, but it requires a receptive patient.” (24)
      Comprehension of the gravity of the situationAn appropriate level of apprehension and skepticism can signify that the patient fully understands what transplant involves, including lifelong commitments like immunosuppression.“If somebody is not scared after they have spoken to us, that sets off an alarm in my head.” (25)

      “They should be a little bit like a deer in headlights at that point because that really lets me know that they understand the gravity of what we’re talking about.” (26)

      “They need to be appropriately skeptical.” (27)
      Providers err on the side of emphasizing negatives of transplant more than positives to ensure that the patients understand the gravity of their decision.“I think the other thing is really understanding that the immunosuppression is for life. So we’ve have a few patients who’ve been you know a little rocky on the immunosuppression because with prosthesis you can be like “I don’t feel like putting it on today” right? I’ve got diarrhea from my micro fentalate—stop it and it will go away. So there is this sort of difficult for them to understand and make that commitment for life, and trying to impress that upon them and making sure they really understand it.” (28)
      Barriers to comprehensionThe volume of information shared with the patients is overwhelming and inhibits their ability to absorb key information.“It seems to me that a lot of patients are not really aware of everything that’s gonna be asked of them and I think it’s partly because the trauma of being an amputee is so overwhelming for a lot of these patients that it’s very difficult for them to absorb all of the information that we’re throwing at them. This is the side effects of the drug, this is the effects of immunosuppression, these are you risks, and this will be for life, and this will be your function etc. etc. I would find it very difficult myself to absorb. So I think it’s really…. I suspect that they don’t. I suspect a lot of this just washes over them.” (29)
      Having a cognitive deficit from previous trauma or illness hinders a patient’s ability to comprehend necessary information.“I think PTSD, you know, because they’ve all been through some sort of trauma, and that’s a given in coming to our door so to speak, but the third gentlemen has a cognitive impairment. He has a traumatic brain injury, and although he is very high functioning with his TBI, that cognitive impairment is an issue pre-transplant, during surgery, and then post-transplant, and it still continued to be even after we discharged him.” (30)

      “And I think if there are any cognitive issues, that’s just huge. It just makes the amount of learning and memory that’s required and the ability to adapt…. These people need to be able to do that and it’s very hard if they have…” (31)
      C. ResilienceAs there are periods of worsened function and setbacks associated with transplantation, patients need to be able to withstand and adapt to those challenges in order to achieve improved functional status.“I think one of the key components of that is a resiliency of person in whatever way you want to phrase it meaning that they’ve gone through many times a difficult accident. You look for them to be…. Potential to respond to an adverse event and you judge that ability for them to respond to that adverse event.” (32)

      “And the resiliency also comes to the fact that life is unpredictable. You may be okay financially and family wise right now, but maybe, in two weeks something bad…we don’t know. When that thing happens, how are they gonna cope? So, if they don’t have that inside resilience or inner strength thing – ‘I’m already dealing with this – I can’t take another thing – Boom.’” (33)

      “People that are more resilient tend to withstand these highs and lows better because anybody does well when things are good. It’s a lot harder to cope with the lows when you have problems or complications.” (34)
      D. Outlook and expectationsPatients’ outlook and expectations shape their perception of posttransplant function.“Pre-operative expectations I think directly filter into post-operative outcomes. Or at least perceptions of post-operative outcomes.... There are multiple examples of patients undergoing limb transplantation who objectively have marginal functional outcomes but are ecstatic. And so they interpret it in a way… I don’t know these patients personally but probably had to do with the fact that their expectations were set pretty low, and they were comparing to marginal function or maybe they had maxed out their prosthetics and so on. On a similar vein there are patients who functionally seem to have very good metrics, but are miserable and they hate their results of the transplants. So I think that expectations are incredibly important in guiding post-operative outcomes.” (35)
      E. PositivityMore optimistic patients are better able to adapt, adjust, and cope after transplantation.“If you could list happiness as one of your factors in your study, I would say if they come into the assessment a happy person, their generally gonna be, and the two people you interviewed display that, they’re gonna be happy in any…they’re gonna adapt, and adjust, and cope in sort of any situation and that’s what they show us in the pre-transplant period, which is so important post-transplant because even now you can go to either of those gentlemen and say ‘you got an infection, you’re gonna need IV antibiotics for awhile and I’m sorry you won’t be able to do the following.’ ‘Okay, we’ll get through it.’ They have the personality that fits. They bring a happiness into the room.” (36)
      F. Perspective on trade-off between immunosuppression and functionPatients have to be willing to make a trade-off between the potential for improved function and making a lifelong commitment to immunosuppression.“So, it’s a lifelong commitment and the results are unknown. We don’t know exactly how much improvement they will get, but we know that it will not be perfect. It will not be anywhere near perfect. And so for people to do this and to put themselves through the side effects of immunosuppression, when they’re making a commitment, usually for life, and being on these drugs. Swapping something which is, in most cases, a reasonable amount of functionality for something that is unknown. And for which you have to go through a period where there is an intense amount of re-training and physical therapy.” (37)

      “If you have sort of the horrible downside of immunosuppression associated with the benefit of the conditions, infections and so forth associated with it, the patients need to feel the transplant provided the value that they were hoping for. And quite honestly there’s not a patient that we had bilateral hands removed or maybe there will be one, but there are a lot more patients that had a single hand removed and I think, in my mind it really is an expression or—yeah expression of the value that patients receive. They could get by with one hand fine and the added burden of immunosuppression, of rehab, of all those things just are not worth it in their mind to the loss of the lifestyle they could’ve had. And that’s why you really have to feel out single hand patients to be successful, compliant and happy. A lot more are probably on the fence and could be amputated again. But for bilateral hand or face patients it’s really unheard of that a patient would stop immunosuppression or decided that this is not something that they want to proceed with any longer. So I think the value is quite clear, despite the side effects and the negatives of immunosuppression.” (38)
      G. Psychological acceptance of transplantTo varying degrees, patients must deal with the knowledge that they benefited from another person’s death, which may involve managing gratitude and guilt.“And there’s a huge psychological component to this. It’s dealing with the fact that you’re benefitting from the misfortune of another human being and there’s all these issues of incorporation of self that become pretty heady and not all patients have to wrestle with that. Some people just kind of accept that. But other people have a hard time with it.” (39)

      “…he still gets tearful not sobbing, but just tears in his eyes because it’s so meaningful that this family made this incredible gift and was willing to take a leap of faith in donating the arms. And the first time our third patient, who you’re going to meet, woke up he was very emotional that day and immediately wanted to know who was the donor, how can I send the family a letter, you know, very tearful that first day and we had to say ‘wait a minute, we’re not gonna write any letters. This is really emotional and we’re just gonna be with that right now, but we’re not gonna contact any people, we’re not talking to media.’” (40)
      H. ImpulsivenessSigning up for a transplant requires a certain level of comfort with risk-taking, but too much impulsiveness can get in the way of compliance.“Even people who are impulsive there’s no way to be impulsive in going through these things. Impulsiveness is a detriment that I saw.” (41)

      “I think like you said, that sort of, that, some people that take on something new and are willing to kind of take on a risk can sort of be cowboys, you know? And I remember talking with a social worker on the VAD service once about how these people, they agree to do this thing, and it radically alters their life and some of them absolutely go against the things that they tell you not to do. Because they’re like ‘hey, I’m already on borrowed time!’” (42)
      I. Attitude toward publicityPublicity and media exposure can be motivating for some patients but jarring for others.“But a lot of them do [want notoriety]. A lot of them are quite happy. It’s positive attention, probably when they’re so used to having negative attention. But I do think that motivates some of them more. It gives them a lift. Not motivates them, but it helps their spirit. It’s like another support. Someone is interested in their story.” (43)

      “Then you have Subject 3, you know he’s a movie guy so! So you can see how he’s made the movie. He’s paid it back into his film life. But then our third guy, he’s been under the radar. He’s retired. He’s doing his thing, he doesn’t want to be in the news, and that’s fine too!” (44)
      Publicity can motivate patients and make them feel good about themselves, but it can also make patients feel entitled or more important than others.“I think some patients in the past have kind of gravitated towards that attention and they have a hard time when it starts to go away.” (45)

      “I think it’s very…. I think it’s a lot. I do get some mixed signals like yes you are a big deal and you are a big deal, but like so is my stroke patient next door. This is something new and everything but honestly, but I also care about the person next door just as much as I care about you. So from a caregiver aspect there’s just sort of this… I have to keep myself in check because this is not you know… Everybody matters.” (46)
      J. AdaptabilityTransplant teams look for a patient’s ability to adapt to previous limitations, as this helps them predict how the patient will deal with the challenges of transplantation.“[One thing I think makes a difference is] how they adapted to their limitations. Because they need to re-adapt. So people who have been able to adapt, and they could have been ostracized, but they adapted somehow. The capacity to adapt is an important trait.” (47)

      “Being incredibly adaptive beforehand. So just by being a quadruple amputee sort of finding a fairly fulfilling life given all of their disabilities and limitation beforehand. Life had meaning despite their impairments and they were hoping this would give them some more function but it had meaning to them even without having limbs.” (48)

      “I do feel like many of the people we see are truly exceptional, who are the ones who have, in many ways, adapted the best to their circumstances, and are looking for something different or even, in some ways, better for them. They’re the ones who are the survivors, who are the go-getters, who are the people who are not sort of phased. Or they’ve been phased but they’ve gotten over it and have decided they have something that’s gonna drive them forward.” (49)
      III. Patient Behaviors
      A. Pleasing the care teamPatients feel a responsibility to please the care team. They tend to not admit a lack of understanding before transplantion and minimize negative outcomes.“We can run into it especially when we’re asking people to report on outcomes that we don’t have appropriate benchmarks for. I think people can sometimes fall into a trap where they start to give overly rosy reports on things to us because they feel like they have an obligation to us.... They might not even realize they’re doing it, but it’s because they feel like we have invested so much time and energy in them that they owe it to us to somehow be like this index patient, regardless of whether or not they’re actually meeting those types of milestones. So I think that they need to be honest.” (50)

      “I remember there was a younger woman I saw which was a lower limb transplant and it was somebody Subject 9 had seen, and you know when she spoke I could hear her echoing Subject 9. I could almost hear his voice! She was saying the same words like she understood, but what she wanted I could tell was something totally different. You know it was totally unrealistic.” (51)
      B. Taking an active rolePlaying an active role in and assuming responsibility for recovery leads to better outcomes.“People say you know, we trust you enough that we’re gonna do this with you. As opposed to being on the sidelines.” (52)

      “In general, just about every patient I can think of had certain goals they had to get through before they could go through it. They had certain requirements they had to comply with or things that they had to take care of in their lives or their medical situation.” (53)

      “Post-operatively, you know, not just doing things to them but doing things with them and their support system is really important as far as, you know, the dressing changes and exercises.” (54)
      C. Responding to selection process challengesProviders use patients’ behavior during the selection process as an indicator of how they will behave after transplantation.“And I agree with the idea that if you can replicate some of what they will go through afterwards: the monotony, the cautiousness, the slow process with which things happen. You know, after the excitement of the surgery, once the recovery is there that this is a very slow and very tedious, very tedious, process of recovery. So, in a way, if you can test individuals under those kinds of conditions to see how they respond, I think that’s probably as good a way to try to explain it to them.” (55)

      “I would add that just about every patient that goes through screening goes through screening for a number of months at minimum. And there are a variety of requirements that are put on them that sort of gauge the compliance. Where they’re asked to stop smoking, where they’re asked to take care of certain things, get treated for hepatitis C prior to transplant. Whatever it is there are things that show the level of compliance and engagement.” (56)

      “And I think even just how patients go through the evaluation process. Do they show up on time? Do they show up prepared? Do they show up with a support system? Do they ask informative questions? And there’s a lot involved in the evaluation. Do they get through that process well and appreciate it? Or do they kind of say why do I have this other appointment? Why do I have to keep going through this?” (57)
      IV. Social Support and Resources
      A. Strength of supportCaregivers should be “heroes” for the patient. Committed and stable support is essential for a successful posttransplant course.“Social support is so absolutely key. I mean when you see somebody who’s got really good social support, it’s very obvious. When you see people… I wouldn’t say ‘faking it,’ but in a word you can tell that they’ve just brought somebody in and there is no real commitment that has been established already… And it’s just a hopefulness that this will work out. I think that’s a very bad sign.” (58)

      “I think somebody who has made a commitment to the patient, and has been through the worst of it. I think those people are very obvious because they know what the patient is going to say before they even say it. They’re usually that close with them. When you have this patchwork of people who are coming in and out, that’s usually not a good sign. You need to have somebody who is the main one or two people, who are really there, who are very close, who know the answers to the questions even before the patient does. I mean, it’s clear when you see those people, right?” (59)

      “They need to have appropriate social support network. They need to have at least one or two heroes in their life that help them get things done. Those are people that are rock solid. That they trust. The patient trusts. Whether or not we trust them, but the patient needs to trust them. The need rocks in their life.” (60)
      Physically capable supportCaregivers must be physically capable of and be prepared to provide for and physically move the patient.“Most of these people, they need to be able to transfer you. Because you’ve sort of lost all the other ways that you… I mean somebody has to carry your arms when you’re being transferred. You know, there’s those kinds of things that… So I just think that’s kind of a family training piece. And the expectations around that. Some family don’t really want to be involved in like the… you know, real personal care of their loved one. They kind of want that to be still sort of giving some privacy there maybe. But somebody has to do it.” (61)

      “And so the post-discharge issues I think are huge, and so whether a person is going to be able to have the sufficient support at home. And it needs to be not just you know like a loving family member. It needs to be somebody that can do physical work, and transport this person, you know every day! For months. And that is really… Trying to get somebody up from their bed who is dependent and into some kind of a vehicle to get here is hours of work. It’s exhausting.” (62)
      Depth of support networkGiven the depth of caregiving responsibilities, patients need a strong social support network to ensure someone can step in if a primary caregiver is absent.“These patients fit within a fabric. A social fabric, and to carry the metaphor, that fabric, it needs to be solid. Because even if somebody as an individual is the most inspirational, motivated, charismatic, everything—you know compliant. Everything under the sun. If they’re by themselves, this is way too big of a weight for one person to carry, and I think it dooms them to failure. It might even doom them to failure in the pre-operative setting because they can’t get to their appointments.” (63)

      “I think if you have one person in your family who can be supportive, that’s great, but something could happen to that person. And that actually has happened before. Like where somebody who was supposed to be the backup person could no longer be the backup person anymore and sort of also looking at the breadth of what your social network could be. That person could, you know, break a leg. Or they could for some reason have a falling out with you or there could be other reasons so I think having a little bit of breadth of people that could step in is important.” (64)
      Trusted supportCaregivers are most effective when they have the trust of both the patient and the care team, especially when the caregiver works with the care team in the hospital to assist with rehabilitation.“I think the one thing I was just thinking, for myself, the next time is making sure that I get families physically anticipating. Even on the very first day, ‘cause I know that there is a fever involved in the ICU but making sure that they’re physically hands-on with the patients with me…right from the get-go.” (65)

      “…the family being here and part of the process, whether its pre-transplant or in the ICU or afterwards. That was another important piece I wrote down. I agree. Their presence can speak volumes.” (66)
      B. Financial stabilityBaseline financial resources are necessary for patients to cover costs associated with compliance with medication and posttransplant protocols.“They actually need to have reasonable financial means. This is not cheap. This should never be… there should never be a financial hurdle to them getting to see… Like going to the emergency department if they have an issue or something like that, coming in for follow up appointments… It needs to be finance neutral basically.” (67)

      “I think I’ve heard a number of patients on both sides of the coin too be, as we talked about, the importance of compliance, the medication regiment for them can be difficult. Not necessarily from a pure compliance perspective but from a financial perspective as well. So I’ve heard some of the patients sort of have more difficulties in the rehabilitation or the long shore of the immediate peri-operative period with financial sort of management of some of their larger medication lists with the co-pays.” (68)
      V. Care Team
      A. Challenges of predicting complianceIt is extremely difficult for the care team to accurately predict how compliant a patient will be.“I would just add that I think there is a great deal of personal biases and speculations in doing this. You know you tend to feel better about certain patients and can’t even name why. It could be because of their partners, it could be the people that come with them, it could be their attitude in the room when you examine them and interview them. So there is a great deal of gray area where I think our biases may you know select the people we feel will be successful, but they might not end up being successful, and the other way around. Ones who are excluded may be excluded because of our biases and in the end they would have done fine.” (69)

      “I think I would agree with Subject 20 that there is, in assessing compliance, there are objective and subjective parameters. You can objectively attest that a patient has a supportive environment and family. That does not necessarily mean that they’re going to be compliant in the end. Now in the absence of any supportive environment, that is a problem per say. Assessing compliance is challenging.” (70)

      “My understanding is how they presented and through all their pre-op like pre-transplant workup the thought was like “okay this patient is going to do very well” and then it turns out that they’re not doing very well. Especially from a compliance-type standpoint. And then some of the patients were like “okay this is a little bit of a risk but we think we’re gonna take it because of the potential benefit.” You know then those patients are actually doing very well.” (71)
      Overestimating capacityPatients tend to overestimate their capacity for compliance prior to transplantation.“Having a real sense of what ‘compliance’ means is incredibly important and being able to execute on that. I mean I think any of us as human beings can hear something in the abstract and say ‘Oh yeah yeah, of course I’ll do that. Of course I’ll do six hours of therapy every day’ and so on. But when it comes down it, when you’re tired, in pain and so on, I think that’s a different story. So the factors that figure into compliance are once again, expectations, social support, and, frankly, just stamina.” (72)

      “I think most people, especially going into this will choose to believe in their rosiest vision of themselves. And so if you ask somebody who’s come in ‘Do you think you are a functional compliance badass?’ Of course, they’re gonna say yes! Right? Because they want to manifest that part of themselves really badly. But the question is, is when it’s in the context of a whole bunch of other things going on at the same time, are they able to do that? That’s a different story.” (73)

      “And then on the longer term I think sometimes the folks, like Subject 16 was saying suffer from like follow-up fatigue. Right? They just, you know, they’re coming in very frequently and it happens for a little while but then they keep needing to come in very frequently. We have to keep saying “Oh you know we have to do your bloodwork again next week, you have to come back for another appointment this week, we need another biopsy this week and just the length of time that that kind of goes on.” They’re like yeah I know you kind of told me it would be like this, but this is not what I expected at all.” (74)
      B. Distance from care teamCoordination challenges for posttransplant care arise when the patient lives far away from the transplant hospital.“Physical distance is definitely a challenge for a lot of these guys… Under the best circumstances, it’s really hard to manage a patient that’s like 2000 miles away, and when there are financial and compliance issues on top of the distance, it gets really complicated.” (75)
      Tension between routine and transplant careHometown routine care providers may be unfamiliar with posttransplant care, which can lead to diagnostic uncertainty and tension among patients and providers.“I mean I think the thing that has become more tricky is the long-distance management. You really need that local team to help and sometimes there’s a tension there.” (76)

      “I mean you can understand it from the local center’s point of view. This is something they’re being asked to follow-up on, but they didn’t really have a hand in setting up.... Long-distance care is always difficult and particularly patients who are complex, and when there are things… you know all the time. How many times have you seen a rash that you don’t know? Is that infection? Is that rejection? Is that something else? And so it’s always difficult particularly from far away.” (77)

      “I think for patients there are other physicians like primary care physicians. They have local care teams if the patients aren’t from here; they end up having a really good working relationship with those other providers.” (78)
      C. Providers’ ability to shape expectationsHelping patients set appropriate expectations, although difficult, is critical to how well they deal with posttransplant obstacles and the recovery process.“The realistic expectations around that are, I think, very hard for people to absorb.... I know there [have] been people that have said, ‘I just want to be able to hug my family.’ That’s a realistic expectation. Being able to do other things may not be. Setting up the appropriate expectations I think is...” (79)

      “Yeah, realistic expectations might be a good predictor. (laughs) I think you’re right: if people think, ‘oh, you know this is gonna be great, I just want to go forward and not really think of the consequences. The potential consequences.’” (80)
      Impossibility of setting realistic expectationsUltimately, there is no way to fully prepare a patient for transplant. Some information can only be gained through experience.“I like the idea of, I mean the patients are perfect, because they can give a roadmap. We’re like trying to navigate the system through which they have no real understanding when we talk about transplant to them.” (81)

      “I think there’s really no way for them to grasp it until it’s actually happening.” (82)
      Patients tend to focus on positives of transplant more than negatives, preventing them from developing realistic expectations. Providers emphasize negatives to offset this tendency.“And, basically, this is a life-changing operation. It’s more than just the operation: this is a life-changing intervention, and they don’t always appreciate that. Sometimes they come in thinking it’s just an operation, and they wake up thinking they’ll have workable hands and they’re done. And so it’s incredibly important I think for us to be vessels of truth to whatever extent we can. And I would imagine it sometimes feels as though we’re trying to talk them out of it. I think if we’re gonna err on the side of anything, we err on the side of painting a bleaker picture as opposed to too rosy a picture.” (83)

      “I think we probably try to draw an outcome and picture that is more pessimistic than we actually think it’s going to be because we want to be certain that the patient understands all potential side effects. The patient comes from the other extreme that they hear what we say but they want to understand something which is not necessarily, or which may be a little bit from, the realistic outcome.” (84)

      “But we are, I would say, in general, aggressively working at lowering their expectations rather than increasing them. I don’t think we’ve ever had a patient that would expect very little and be pleasantly surprised at how great it’s gonna work [in terms] of function.” (85)

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