EXPERIMENTAL AND CLINICAL TRANSPLANTATION

Key words : Deceased organ donation, Education, Ethical donation, Living donors, Organ shortage

Thanks to advances in surgical techniques and immunosuppressant medication, organ transplantation is now the best therapeutic option for children presenting with end-stage disease, with an excellent 10-year survival rate.¹ The importance of these lifesaving and/or quality-of-life improvement procedures and the commitment of the health care teams, even during the COVID-19 pandemic, have been demonstrated by the successful transplant surgeries performed at Middle East centers such as those in Turkey and Iran.^1,2

Worldwide, pediatric transplantation centers and prioritization of organs for children are being established. However, there is an important discrepancy observed when comparing high-income countries versus low-income and middle-income countries, as programs are active in some, but inactive in many others.³ Moreover, in many places, living donation is the main source of organs. In the case of the Middle East, deceased donor programs for children are present in Iran, Turkey, Kingdom of Saudi Arabia, Kuwait, and the United Arab Emirates.³ Nevertheless, even with these programs in place, except in Iran, there remains a low rate of utilization of organs from deceased donors, leading to organ shortage.³ Through the promotion of organ donation, especially from deceased donors, the growing demand for organs could be reduced in an ethical, legal, and transparent way.⁴

Therefore, the International Symposium on Pediatric Organ Donation and Transplantation took place March 6-7, 2024, in Kizilcahamam, Ankara, Turkey, bringing the opportunity to the transplantation community to present recent advances in clinical and surgical science and to discuss ways to promote organ donation and the practice of transplantation in children. One of the sessions was an open debate, and here we present a summary report.

Materials and Methods

All participants of the event were invited to an open-panel discussion/brainstorm session to provide their views and experiences on pediatric transplantation by answering this question, “Why is pediatric transplantation inactive and mostly relying on living donors in many regions of the world?” We used the “5 whys technique”⁵ to discuss possible causes/barriers and “what can we do?” to present potential solutions.

The different challenges and/or barriers that were proposed can be divided as follows: (1) lack of knowledge; (2) cultural and religious reasons; (3) role of the media and social media; (4) surgical challenges, need for experienced teams, and ongoing medical support; and (5) need for allocation and prioritization systems for children. We discussed possible solutions.

Lack of knowledge/information from different stakeholders

Lack of knowledge on pediatric transplantation and organ donation from the public, politicians, journalists, and health care professionals (HCPs) was proposed as one of the main reasons responsible for the low rate of organ donation and transplantation. This could be related to a scarcity of communication of accurate and reliable information provided to these groups that may originate from an absence of interest and/or enthusiasm in the topics. The culture of the region and the interpretation of the religious texts (see next section) play important roles.

Another important topic is the lack of knowledge about the laws on donation and transplantation that are in place in each country. For example, since 1979, Turkish transplant law has been in place to provide legal grounds for donation.⁴⁶ However, millions of potential donor candidates die with healthy, lifesaving organs, translating to a high number of patients on wait lists and reliance on living donors. Therefore, even with the law in place, HCPs may be reluctant to perform transplants, fearing ethical issues due to the interpretation of the definition of death. Also, living donation has been considered easier to implement, generating a degree of inertia in the decision-making process that is needed to encourage and conduct a deceased donation program (donors from both brain death and from circulatory determination of death). On the other hand, the public may be unaware of the law and opt not to donate. This phenomenon leads us again to consider challenges in education and communication on transplantation topics to be at the root of the low donation rates.

There is a clear need for HCP experts in transplantation to be protected by the law and to be aware of the legislation of each country. Education on legal and ethical issues is crucial; therefore, participation at meetings, membership in medical societies, and active communication and interaction with peers are greatly encouraged.

Continuous campaigns on organ donation awareness are needed, to highlight the importance of transplantation as the best option for children and adults with end-stage diseases. With the help of religious leaders and the transplantation community, the public will be reassured about the acceptance of organ donation and transplantation as a moral act. In this way, they will obtain accurate information that may help in increasing their trust in the health care system.

Cultural and religious reasons

Low deceased donation rates may be due to religious or cultural reasons. People may be hesitant to donate organs of a family member or even their own organs based on the personal interpretation of religion in terms of the respect toward a dead body. There is presently no unified agreement in terms of organ donation or in the acceptance of brain death or circulatory determination of death, because the diversity of religious viewpoints is an expression of the different interpretations of religious texts.

The encouragement to save a life being in favor of organ donation and transplantation may be based on what is said in the Qur’an “Whosoever saves the life of one person it would be as if he saved the life of all mankind.” Long before the legislation that was passed in 2000, the clear inclination toward the practice of organ transplantation was highlighted in 1989 by the religious approval (fatwa) from the Supreme Religious Leader obtained in Iran that recognized brain death and allowed for deceased donor organ transplant procedures.⁷

Customs that have been rooted in the culture for centuries may be extremely challenging to change. However, always in the utmost respect for the traditions, we can educate the next generations. The inclusion of education modules on organ donation and transplantation in the curriculum of primary and secondary schools may be a way to introduce new concepts to children, encourage the discussion with friends and families, and promote donation. There is a global, international educational program known as “Connecting D.O.T.S.” from The Transplantation Society that is freely available at no financial cost and can be easily accessed via the internet from any computer anywhere in the world.⁸ This program can be translated into the language of the region and implemented in schools at the local level.

Surgical challenges, need for experienced teams, and importance of ongoing medical support

Organ transplantation in children is complex and is best performed at institutions with significant experience in both surgical issues and management of postoperative complications, as well as the presence of a medical team to follow the patients until adulthood. However, not every center is able to perform these types of surgeries and/or has a team dedicated for the follow-up. Also, these children require immunosuppressants and several types of medications to maintain healthy organs during their subsequent growth and development. There is a dearth of trained HCPs for pediatric surgery and for the management of donations from brain death and circulatory determination of death, and this insufficiency may be related to the following: lack of interest in the topic, paucity of evidence-based studies comparing outcomes in adults and in children, and failure to raise the right questions with the best person to improve knowledge and competence in donation and transplantation issues. The cost of lifelong medication may have a negative effect on public or private health care systems.

There are various possible solutions to these situations. The simplest solutions (but not the least powerful) are active involvement in medical societies and participation at meetings to cultivate fruitful relationships and to increase networking. The search for mentors and the availability of sister training programs (an experienced transplant center that supports another transplant center) are excellent ways to nurture education opportunities and advance a career in transplantation.

Government financial support, private insurance coverage, and cost-saving strategies involving relationships with biotechnology/pharmaceutical companies to partially or totally cover the financial cost of medication would help patients to access safe and affordable drugs.

Role of the media and social media

The media and, more recently, social media have important roles to shape public opinion regarding organ donation and transplantation. The speed and the reach of the distribution to the public almost everywhere in the world are facilitated by the easy accessibility to internet connection. Unfortunately, both media and social media can also contribute to misinformation or sensationalism with a negative effect. Misinformation from the media may be related to a lack of awareness of (1) the legal and ethical organ donation system that is presently in place, (2) the successful outcomes in pediatric transplantation, and (3) the religious point of view in favor of organ donation as a morally permissible act. Because the use of social media is unregulated, anyone can post inaccurate information.

The effective use of social media is crucial. At present, social media is used by HCPs to increase awareness of diseases and promote life-changing habits. In the case of transplantation, some experts in the field use social media to deliver high-quality information to patients and their families and thereby encourage deceased donor registrations.⁹¹⁰ However, it has been pointed out the need for the safe and correct use of these platforms.⁹

Need for allocation and prioritization systems for children

Solid organ transplantation in children is complex due to age, weight, size of organs, and surgical challenges. Therefore, low donation and transplant rates may be a result of challenges in organ allocation and prioritization systems that can be due to several reasons, some of which we discussed in the previous sections.

Proposed solutions included the (1) establishment of a pediatric prioritization system, (2) a quota for pediatric transplantation enacted by the law, (3) use of split livers, and (4) national paired donation programs.

Discussion and Conclusions

The best treatment for children with end-stage organ failure is solid organ transplantation. This lifesaving therapeutic option is essential to avoid unnecessary suffering and to offer a healthful future to those in need. However, no transplant program is possible without legal and ethical frameworks. Therefore, the starting point is the knowledge and comprehension of the law, as well as the principles of safe and ethical donation and transplantation that have been recognized by religious leaders as morally permissible acts.

Education of all stakeholders (from the public, to students, HCPs, and the government) is a key element in correcting myths, outdated information, and/or misinformation. Educated members of the government and of the health care system will be better able to understand the need for establishment of pediatric transplant programs, the importance of promoting deceased donation to reduce organ shortage, the requirements for allocation and prioritization systems for children, and the societal benefits derived from all these previously mentioned items. Continuous public campaigns to increase awareness could help to reverse the persistently low rates of deceased organ donation.

The increased interest of HCPs in pediatric transplantation throughout training in medical and surgical topics and in an active participation at meetings and societies will lead to the improvement of the health care services provided to the patients.

Children are the future of our countries; let us hold hands together to help them go through the difficult moments of sickness and to have a brighter life.

Volume: 22 Issue: 10 October 2024 - Supplement - 5

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