Saving lives through transplantations – How access to information can make a difference (13 min read)
Transplants can grant new life to people whose organs are irreversibly diseased. However, there is a huge gap between demand and supply, partially because many potential donors lack knowledge about transplantation. Better access to information can change this situation and save lives.
Aug 09, 2018
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In a hospital in Rotterdam, Dr. Frank Dor and his team were trying to give a teenage boy more time. Their 18-year-old patient had a fungal infection but the treatment had led to liver failure. As his health worsened, he was placed on the urgent waiting list for a new organ, a list for people who will otherwise die quickly – but all over Europe, not one liver was available. Dr. Dor and his team had done everything possible to sustain the teenager’s life: Every day the boy could hang on, there was a chance that a donor organ could become available. “We even decided to remove the diseased organ and to do a liver bypass,” Dor says. “This procedure would buy the patient another 24 hours – but when the surgery was nearly finished, the patient died of cardiac arrest despite several attempts at resuscitation. Now the Head of Transplantation at the Imperial College Renal and Transplant Centre at Hammersmith Hospital, London, the event remains fresh in Dor’s thoughts as does the utter frustration of it. “There was nothing we could do for this boy, who shouldn’t have been in this situation to start with.”
If someone needs an organ transplantation, ideally, of course, the process would occur immediately. This is not at the case, however. Even in countries with advanced healthcare systems, patients typically wait months, and even years, for life-saving organs. In the US, for example, in 2017, there were approximately 115,000 men, women and children on waiting lists, but only 35,000 – not quite one-third – of these patients received organ transplants.1
This heavy deficit in donor organs is similar in Great Britain. Here, the waiting list is based in part on how long a patient can survive without an immediate transplant. In the case of Dr. Dor’s young patient, it turned out to be less than a day. His case is one Dr. Dor has seen before, and since: Virtually everywhere, there are more patients on urgent transplantation waiting lists than organs available. In order to improve this situation, transplantation professionals like Dor advocate that as much access as possible to information is needed for three groups: patients, transplant professionals and the public.
For patients with kidney failure, it is of the utmost importance to find a live donor well before they need dialysis.
Informing patients: making proactive choices
Finding an organ donor is a race against time for many reasons. For example, most of Dor’s current patients have kidney failure. For them, there are two possibilities to receive a new kidney. The first possibility is receiving it from a living healthy donor, usually from the recipient’s personal network. “Almost everyone can donate a kidney. We call this approach ‘living donation,’” adds Dor. In the second option, the organ comes from a deceased donor.
Though there are two options, a living donation is by far the best for kidney patients, explains Dor, because it offers many advantages. Firstly, through a living donation, surgeons can better plan the transplantation, and secondly, the time the organ is outside the body (kept on ice) can be shortened significantly. Both factors can increase the chances of a successful procedure. Another reason live donations are preferable is that they can provide transplant options in otherwise untransplantable situations, for example across blood type barriers, or when the patient has developed antibodies against the donor organ. Finally, with a live donor, dialysis can be prevented (preemptive transplantation). “All of those factors increase the long-term success of a kidney transplantation drastically – and not by just a little bit. They double it,” says Dor.
This is why for patients with kidney failure “it is of the utmost importance to find a live donor well before they need dialysis,” Dor continues. “Because once they start dialysis, their condition worsens, and that lowers the success rate of a transplant. Meanwhile, on dialysis, on average 50% of patients die within five years. This survival rate is even worse than for some cancer types.”
With such dire outcomes, one of Dor’s priorities is to inform patients as early and accurately as possible about their situation – and what they, themselves, can do. “The most important questions are how to find a donor, and how to find him or her in time. Patients often struggle to ask their loved ones to donate a kidney to them,” explains Dor. “And even if people offer to donate, patients often are reluctant to accept this selfless gesture, and then end up on the waiting list for a deceased donor kidney transplant.”
Many times, the patient’s loved ones offer an organ, yet they are not always suitable donors. That is because living kidney donors must meet many criteria: They must be generally healthy, have two functioning kidneys, must act on their own free will without experiencing pressure or earning money, and have no risk factors for kidney diseases themselves. They must also be infection- and cancer free, Dor adds: “Potential donors are screened very carefully to guarantee safety for the donor’s future health, and for the recipient’s benefit.” Still, the possibility of live donation means a potentially safe, successful – and sooner – procedure.
Dr. Dor advises his patients to look for a living donation for their kidneys - before they need dialysis.
Informing professionals: staying on top of a rapidly evolving field
Even when an organ becomes available for a patient, the patient still faces risks: Surgery and post-surgical treatment is complex and requires significant expert knowledge. In addition, doctors must always be up to date. For transplant specialists such as Dor, access to high quality, evidence-based information on all aspects of solid organ transplantation help make the best treatment decisions and improve patient outcomes.
Besides kidneys and hearts, livers are the most transplanted organs in the world.
Physicians with greater access to specialist networks and information platforms provide colleagues with necessary support in increasing skills and knowledge. “My field is kidney transplantation, and I am living and breathing this topic, honestly,” says Dor. Among other channels, he often uses social media to find out about, and share, the latest techniques and to connect with other experts in his field of medicine – which is evolving rapidly. And while “conferences are perfect for information exchanges between specialists within the transplant community,” says Dr. Stefan Wiemann, Head of Transplant Europe at Sandoz, “for various reasons, including lack of time, many physicians and surgeons simply can’t make it in person, even to the most relevant events.” But without a doubt, broader and more systematic access to specialist medical information is needed.
Besides exchanges with colleagues, access to the most recent publications enables surgeons to offer their patients the most appropriate advice in each situation, whether it regards technology for improving organ survival rates, techniques for transplantation surgery or post-operative care – all of which are rapidly evolving. Specialists benefit particularly from the most up-to-date-information on topics including perfusion strategies, living donation, the changing landscape of anti-HLA antibodies (which are involved in the immune reaction of the recipient against cell surface proteins of the graft) and the development of new immunosuppressive medicines.2 But time constraints make it nearly impossible for many healthcare professionals to read all relevant publications.
However, specialized information sites can support these doctors’ need for current, and easily accessible, medical information. One example is the Sandoz platform TransplantTODAY (https://www.transplant-today.com/), which provides online and on-demand information for medical professionals. “Here, experts summarize key results from conferences for their peers,” Wiemann explains. “We have built this service primarily for transplant healthcare professionals in Europe, but the service is available regardless of time zone and location. That’s why we attend events that are hard for them to reach.” On TransplantTODAY, for example, experts have summarized the highlights of the American Transplant Congress (ATC) in Chicago in 2017, and made them available as online lectures. “At medical conferences such as these, more than 1,000 abstracts are presented each day,” Wiemann adds. “So even if you were there, it would be impossible to learn about all the research results yourself.”
Overall, whether online or in person, the transplant medical community is not that large. “We estimate that the target audience for TransplantTODAY could be about 5,000 people in Europe,” Wiemann says. TransplantTODAY, however, has already reached more than 700 users from all over the world in its 2nd edition. “With this platform, we want to fulfill the need of physicians to stay current on the latest scientific results. At the same time, condensing the material is key, as most doctors struggle to make time for extensive literature research,” he emphasizes.
“This platform enables us to become a real partner of physicians, and part of the scientific community, because it enhances patient access to high quality transplant medicine. Those efforts differentiate us from other sources,” Wiemann continues. “Our service assists doctors who are working on the forefront of transplantation medicine.”
Organ transplants are highly complex. Medical professionals need to stay up to date about the latest findings and research presented at conferences. Platforms like TransplantTODAY help them.
Informing the public: guiding them toward donations
Scientific progress and advances in immunosuppression over the past decades have led to significant improvements in patient outcomes, in particular for kidney transplantation.3 “Access to medicine is essential,” agrees Dor. Yet he emphasizes that the shortage of organ donors remains an issue. “Many people support organ donation in theory, but only a few of them are registered donors. I ask myself why people don’t simply do it. I guess they don’t want to think about their own death.”
For experts like Frank Dor, better access to information will raise awareness about the need for donor organs among the public. “One approach to this issue is sharing medical information and knowledge among patients and medical staff – and, as importantly, with potential donors,” Dor says. Often, a person’s willingness to donate relies on an understanding of the value of transplantation, and this willingness may increase when the public learns the facts about transplants, including how many people are on waiting lists. For example, one organ donation campaign in the UK recorded that 42% of those exposed to the campaign did “something positive regarding organ donation”, i.e. put thought into their donation wishes or even put their name on the Organ Donation Register.4 5 6
Access to information can also clear public misconceptions and unfounded fears about organ donation, such as those reported by the Mayo Clinic. According to their research, a potential donor commonly fears that the hospital staff “won’t work as hard to save my life” or that “I won't really be dead when they sign my death certificate.“7 Here, access to information about the donation process can sweep away such thoughts. And another important factor involving low organ-donor numbers may be a matter of bureaucracy, suggests Dor, who is an advocate of organ donor cards: Moving from “opt-in” systems (where people must express consent to be donors) to “opt-out” systems (where people must refuse consent) significantly increases donor rates.8
Campaigns and initiatives also encourage people to become living donors. Dor describes one initiative in the Netherlands, where better access to information leads to positive results. “For living kidney transplants, specialized teams of social workers and psychologists help patients organize events at their homes, where they discuss with friends and relatives the options to become living donors.” In his experience, this approach is highly effective. “There are up to five times more live donors from patients’ personal networks than from people who learn about this donation option more generally.”
Still, increasing the number of donors, overall, is the goal. Dor says he is always impressed by the altruism of living donors, but even more so if they donate anonymously to benefit someone they will never know. “It is touching when someone donates his or her kidney simply to do something good.” Of course, dealing with patients and donors – and their fears and hopes – is highly emotional. But it can be so in a very positive way. That’s why Dor, beyond providing medical information, offers all donors one further idea: “Imagine living with someone else’s kidney inside you. Now imagine donating your kidney, so someone else will live to imagine that.”
Contact Frank Dor for discussion: Frank JMF Dor, MD PhD FEBS(Hon) FRCS Consultant Transplant Surgeon Head of Transplantation Imperial College Renal and Transplant Centre Office 468, 4th Floor Hammersmith House Hammersmith Hospital Du Cane Road London W12 0HS United Kingdom
Digital technologies improve follow-up care after a transplantation
Follow-up treatment is a deciding factor for the outcome of a transplantation. Usually patients must see their doctor every three months for a checkup. This can be quite burdensome when their transplant center is far away from their home.
Digitalization holds great potential to alleviate this situation. Sandoz is supporting a pilot project in Belgium. The approach: “accompany” the patients without them physically having to come to the doctor’s practice more than once a year.
In between live visits, patients in this project take blood samples themselves and send these to their doctors. The procedure is safe and easy – comparable to a blood sugar test for diabetes. Physicians can view results of their patients’ tests and other parameters without having to see the patient. Transplant patients only have to come in when the results indicate that physicians might have to act. Between visits, patients can access their medical records and information material in a patient portal.
Such new approaches make processes more efficient, increase convenience for patients and allow doctors to focus on care during patient examinations.
Global Knowledge Base on Transplantation (GKT)
The Global Knowledge Base on Transplantation is a WHO database combining information about organ, tissue and cell donation, and transplantation. Its primary role is to open a window onto the world of transplantation, and to increase transparency for all concerned. It addresses all parties involved in the transplantation process: potential donors and recipients, as well as health professionals and authorities. WHO states that “access to information is the key to understanding value of transplantation and to increasing the motivation to donate.”