Table 1.
Categories | Themes | Sample of supporting text from transcripts |
---|---|---|
Pre-transplant factors and preparation | ||
Patient selection | An interdisciplinary team should carefully select the most suitable patients for hand transplant |
“Mobility is one thing, but I think the main indication for hand transplantation is the sensation that the patients then have in their hands, so that they can feel things and people. And that is what the hand transplant provides, mobility varies greatly depending on compliance and motivation, but a prosthesis can do that too.” (1C)
“I think transplanting a hand for someone who’s been waiting for it and who says life only gets good if they have their hands transplanted is something to think twice about. (…) After that, he is not disciplined enough to train or perform in such a way that it actually has a benefit for him in terms of movement. (…) But if it’s a patient who says he wants the hands because he wants to feel and he’s not restricted in his life in any way because he has designed his daily routine such that he could theoretically get by without hands, but he really wants to feel, I would say ok. He′s a reflective person who knows exactly why he wants that and who has organized his life in such a way that it also works without hands.” (2C) “A congenital malformation is something that should not be transplanted. (..) Then there are patients who have psychological problems, who do not fit into the rehabilitation scheme, who are not compliant, do not perceive control and take medication irregularly, and do not go to occupational therapy. These are things that should definitely be filtered out preoperatively.” (3C) It is very important that each discipline sees the patient and then discusses collectively because patients tell different doctors different things. Because, for example, they have a better personal basis for conversation, for example with another doctor. Or you can talk to one doctor very easily about the medication, but you do not dare say that you have a functional problem. Some patients want to impress certain colleagues, while others do not like them. And that’s why interdisciplinarity is so important, because we are all human. (4C) “I have the image in my head that we have managed to set up a football team in which everyone is aware that in order to win this match we are a team and we have to stick together.” (5C) |
Motives | The decision and motivation to undergo hand transplantation can be influenced by various factors |
“The most important thing is that you have a hand at all and do not walk around with stumps. That was a disaster, that was a real eye-catcher.” (1R)
“The patient wanted bodily integrity - he was not considered complete in his village community since he has a deficit.” (6C) “Even if you hug someone with your hands, it’s flesh and skin as it should be and not plastic.” (2R) “Sitting at the inn table and being able to put both hands on the table was certainly more important to him, because he had a functioning hand with sensibility and motor skills, and because of that the optics and aesthetics were most important for the patient.” (7C) “It was also an important concern for me, when I stroke my wife’s hair with my hands, whether I will feel it too.” (3R) “Sensibility is the main argument for hand transplantation from a professional point of view. Functionally, prostheses can do a lot, only biofeedback is missing, sensibility feedback is missing” (8C) “It goes without saying that I had the unspeakable desire to ride a motorcycle again.” (4R) “And the second reason was his wife’s Christmas tree plantation, on which he wanted to continue working. And for that he needed a strong, functioning hand, since he was never able to work with his prosthesis.” (9C) |
Psychological factors | Psychosocial aspects are considered in selection and contribute to success |
“I would not like to transplant someone who does not have a regular daily routine, someone who has no idea what they would like or could do in the future. (..) So I would like to transplant someone who says I have a job that I go to every day. I have a group of friends that I meet up with regularly. So someone who has very regular routines, who does not live just for the moment, who still lives his life even though he has no hands, is suitable.” (10C) “Any kind of addictive behavior in terms of substance use and alcohol should be an absolute contraindication. Smoking should also be an absolute contraindication. (..). Of course, this is a patient who is vulnerable, who perhaps has less self-discipline, who does not have such an orderly life, and I think that should be a contraindication.” (11C) When we talk about hand transplants, we must not only assume absolute contraindications. Of course there are. Take someone who has severe dementia and has had a serious accident as a result and lost both hands. (..). Where you simply have to say that this cannot work due to dementia and the lack of cognitive abilities. This is an absolute contraindication.” (12C) “I think it’s the most important attitude is the self-discipline. (..) So self-discipline is what brings the maximum benefit to the patient.” (13C) “I think family and supporters, who of course were already there before the operation, are crucial. So a catchment area for physical and mental problems in the immediate family and circle of friends is extremely important.” (14C) “I think the family should be behind it because the transplant and everything around it does not stop with the transplant, it continues throughout life. (..) I think that it makes the whole situation and the whole project easier when the partner the family, or the parents are behind it and participate, because that promotes compliance.” (15C) |
Programmatic factors/influences | ||
Clinical resources | Clinical resources and expertise are fundamental to a successful hand transplantation program |
“The first important thing is specialist knowledge, i.e., I have to know the literature, what are the others doing, what hardware do I need. Between the lines, I need to go where there is a lot of transplanting and talk to other people.” (16C) “The technical know-how alone is not enough. I also need resources, I need a structured program, I need team players so that it can work.” (17C) |
Public perception | Public perception of hand transplantation can influence both the patients and providers |
“But they always think [hand transplant is] great. The public thinks that’s great. (..) It’s also simply fascinating.” (18C)
“Before the transplant, your brother received attention in a negative sense, so you have lost something, you are handicapped, you are limited, you look different. And through the hand transplant, you get attention from the outside, but weighted more positively, in the sense that something special has been done.” (19C) “We doctors also make a lot of mistakes, (..) [but instead of reflecting them] we try to surpass each other with the most amazing and spectacular operations. (..) This also provokes a certain reaction and fear in society. If this becomes a routine procedure, (..) it will no longer be so sensational and you can no longer satisfy the media with it, but it is more of a reassurance for the patients. That’s why I’m a fan of standardization.” (20C) |
Post-transplant factors and outcomes | ||
Rehabilitation | Rehabilitation is a lifetime commitment after hand transplantation |
“You have to mention again and again that this is a long road that can be paved with complications. (21C)
“The most important thing is good physiotherapy and rehabilitation. (22C) He still reports improvement. That has never stagnated. (..) I know that the patient was always motivated to work with his hands.” (23C) “Not a year or two years. You have to work a lot. You have to know that it will be a very difficult road, hard work.” (5R) “This was a patient, who had a high level of activities of daily living (ADLs), and that is also important. And this is also important for the rehabilitation phase.” (24C) “In the beginning, I think it’s normal to make huge moving progress. If you follow the measurements of physical therapy or occupational therapy, there are slight but measurable noticeable improvements every year. In the beginning, the successes were great, big steps, but also changes are apparent year after year, even today. Improvements can be seen in terms of strength, grip, feeling, warmth and perception of cold.” (25C) |
Follow-up and care | Intense provider involvement in post-transplant follow-up and care increases the likelihood of success |
“You have to be able to work with the patients, in the sense that they have to enter into a partnership with the doctor who treats them. (..) You need even more trust than usual in doctor-patient relationships. The transplant patients have to report quickly if something does not fit. The doctor must be available. Such a patient is a task that requires a team. That demands a lot from the medical staff. If you are not willing to do this, you will not get good results.” (…) (26C)
It takes someone willing to deal with these patients 24 h a day, 7 days a week, 365 days a year. (..) If these patients have a problem, it can very quickly end in a downward spiral.” (27C) “I find the support to be very, very time-consuming. The patients require an extremely large amount of time and effort (..)You go on vacation and then you get the messages and the phone call while you are on vacation. (..) that is very time-consuming. Because no finding should be overlooked or forgotten.” (28C) |
Adherence and training | Adherence and training are big predictors for the success |
“You have to trust the doctors 100% and do everything the doctors say. No fantasies of your own, the doctors said 5 mg, that means 5 mg.” (6R)
“I train, I do physiotherapy, they work with me and even if it hurts, nothing happens for a long time, there comes a crucial point and a lot of things get better.” (7R) The functionality is different. It’s very related to what you do with your hands and how much you train them.” (29C) |
Graft integration | Graft integration characterizes a successful transplantation |
“A successful transplant is when the patient accepts their transplant. (..) That is the first step and the second is when you are ready to deal with the transplant.” (30C)
“These are my new hands and with these new hands I will continue my new life.” (8R) |