Mind the Gap: Disparities in Education on Organ Donation and Transplantation—Results of a Global Survey

Abstract

Background.

Widely accessible education on organ donation and transplantation (ODT) is a tool to reduce waiting lists, as <10% of transplant needs are met (Global Observatory on Donation and Transplantation). We aimed to assess the current state of access to education on ODT worldwide.

Methods.

We surveyed transplant physicians and surgeons worldwide. Respondents were classified according to the mean deceased donation (DD) rate per million population (PMP) of their countries from 2016 to 2021 (excluding 2020): Group (G) 1 (G1) no DD reported, or no data provided to Global Observatory on Donation and Transplantation; (G2) <10 DD PMP; (G3) 10–19.9; (G4) 20–29.9; and (G5) ≥30. We inquired about the availability of education on ODT in countries and regions.

Results.

We analyzed 311 respondents. We observed that the availability of education on ODT was as follows: in postgraduate education (77.2% in countries, 70.4% in regions), in undergraduate medical school (52.8%, 50.6%), in elementary school (14.2%, 14.2%), in high school (24.6%, 25.7%), and for the public (58.8%, 57.2%). The highest challenges were observed mainly in countries with lower DD rates.

Conclusions.

This worldwide survey suggests that there are areas for improvement at a global level in education on ODT, spanning from schoolchildren to the public and from undergraduate to postgraduate medical students. This is a “Call to Action” to close the global education gap.

INTRODUCTION

Transplantation is the preferred treatment for most patients with organ failure. Unfortunately, a significant number of patients remain on the waiting list. According to the Global Observatory on Donation and Transplantation (GODT), <10% of transplantation needs are met.¹ A clear understanding of the complex intricacies of organ donation and transplantation (ODT) among the multitude of stakeholders from diverse educational and experience backgrounds, including healthcare professionals, the public, religious leaders, policymakers, and governments, is crucial to increasing donor registries. Addressing misinformation and/or the lack of information and establishing the necessary ethical and legal frameworks are urgently needed.^2-6 These combined efforts would, hopefully, increase deceased donation (DD). Consequently, we found it vital to evaluate the availability of ODT programs across various demographic levels, ranging from schoolchildren to medical universities, in both undergraduate and postgraduate studies, as well as for the public.

MATERIALS AND METHODS

We conducted a web-based survey (SurveyMonkey) from May 2022 to March 2023 among healthcare professionals involved in donation and/or solid organ transplantation from different national, regional, and international transplant societies (Table 1).

TABLE 1.

List of societies and TTS sections

International	National	Regional	TTS sections
TTS	ABTO	AST	CTRMS
ILTS	ACTO	ASOTa	IPITA
ISHLT	COTRS	ASOTb	IIRTA
	CST	MESOT	ISODP
	ISOT	STALYC	IXA
	JST	TSANZ	TID
	SAT
	ONT

ABTO, Associação Brasileira De Transplante De Órgãos; ACTO, Asociación Colombiana de Trasplante de Órganos; ASOT

^a, African Society of Organ Transplantation; ASOT

^b, Asian Society of Transplantation; AST: American Society of Transplantation; COTRS, China Organ Transplant Response System; CST, Canadian Society of Transplantation; CTRMS, Cell Transplant and Regenerative Medicine Society; IIRTA, International Intestinal Rehabilitation and Transplantation Association; ILTS, International Liver Transplantation Society; IPITA, International Pancreas and Islet Transplantation Association; ISHLT, International Society for Heart and Lung Transplantation; ISODP, International Society for Organ Donation Professionals; ISOT, Indian Society of Organ Transplantation; IXA, International Xenotransplantation Association; JST, The Japan Society for Transplantation; MESOT, The Middle East Society for Organ Transplantation; ONT, Organización Nacional de Trasplantes, Spain; SAT, Sociedad Argentina de Trasplante; STALYC, Sociedad de Trasplante de América Latina y el Caribe; TID, Transplant Infectious Disease; TSANZ, Transplantation Society of Australia & New Zealand; TTS, The Transplantation Society.

The survey was created and tested by members of a working group of The Transplantation Society (TTS). It was approved by both the TTS Executive and the TTS Ethics Committee.

The survey was written in English. Everyone who completed and submitted the questionnaire was deemed to have consented to the use of their answers.

The questionnaire was composed of 4 sections: (1) Hospital structure, legislation and policies, and financial barriers, addressed to program directors; (2) Questions on education on ODT directed to all participants, and questions about donor acceptance for transplant specialists; (3) Questions on donor identification for critical care specialists and questions about organ acceptance directed to transplant specialists; and (4) Demographic questions for all participants.

Here, we report the questions about education on ODT (Table 2). We inquired about the availability of education programs on ODT in their country and province/state or region at the postgraduate school, undergraduate medical school, elementary school, high school, and in the public sector. There were 10 sets of answers to trichotomous closed-ended questions, with responses of yes, no, or unsure. They were classified as nominal categorical data (mutually exclusive, nonnumerical categories) and were reported as the number of answers per group and the percentages. The latter were obtained using Stata (Version 18 SE; College Station, TX). Descriptive statistics (mean and SD for all groups per set of answers) were calculated using Microsoft Excel for Mac (Microsoft Corporation, Redmond, WA). The graphs were created with GraphPad Prism 7.0e (GraphPad Software Inc., San Diego, CA) and Microsoft Excel for Mac.

TABLE 2.

Questionnaire

Is there education on organ donation and transplantation:	Yes	No	Unsure
1. In postgraduate education in your country?
2. In postgraduate education in your province/state or region?
3. In undergraduate medical school in your country?
4. In undergraduate medical school in your province/state or region?
5. In elementary school in your country?
6. In elementary school in your province/state or region?
7. In high school in your country?
8. In high school in your province/state or region?
9. For the public in your country?
10. For the public in your province/state or region?

Respondents were classified into 5 groups according to the mean DD rate per million population (PMP) of their countries, from years 2016 to 2021 (excluding 2020): Group (G) (G1) no DD reported or no data provided to GODT; (G2) <10 DD PMP; (G3) 10–19.9; (G4) 20–29.9; and G5) ≥30.

All the answers from the same country were analyzed together.

RESULTS

We received answers from 438 respondents, of whom 311 participants from 64 countries (Figure 1) answered the questions regarding education programs. Respondents were grouped according to the mean DD rate PMP for the years 2016, 2017, 2018, 2019, and 2021 (Figure 1) that were reported to the GODT by their country of practice. The year 2020 was excluded because of the impact of the COVID-19 pandemic. There were 110 women and 189 men (12 missing answers) from different specialties (Table 3). The mean age of the entire population was 53.76 y (SD, 11.57 y).

FIGURE 1.

Number of respondents per country and country code according to deceased organ donation rate PMP. G1. No DD reported or no data provided to Global Observatory on Donation and Transplantation (GODT); G2. <10; G3. 10–19.9; G4. 20–29.9; and G5 ≥30 DD PMP. DD, deceased donation; G, groups; PMP, per million population.

TABLE 3.

Respondents’ specialties and number of responses per specialty

Anesthesiologist	4
Critical care specialist	10
Transplant cardiologist	7
Transplant hepatologist	25
Transplant nephrologist	114
Transplant respirologist	9
Cardiac transplant surgeon	11
Intestinal transplant surgeon	4
Intestinal failure gastroenterologist	1
Kidney transplant surgeon	52
Liver transplant surgeon	29
Lung transplant surgeon	4
Pancreas transplant surgeon	9
Endocrinologist	2
Transplant infectious diseases specialist	11
Nurse coordinator	3
Nurse practitioner	0
Nurse specialist	0
Total	295
No answers	16

Educational Programs in Postgraduate and Undergraduate University Schools

Responses regarding the presence of educational programs on ODT in postgraduate education are depicted in Figure 2A and separated by DD rate (G1–G5) in Figure 3A1 for countries and Figure 3A2 for the regions (regions, states, or provinces). Mean positive answers considering all groups (G1–G5) were 77.19% (SD, 12.17%) for education in their countries and 70.37% (SD, 12.64%) for the regions. Positive answers ranged from 58% to 87% in the first set of responses (Figure 3A1) and from 50% to 80% in the second set (Figure 3A2). Respondents from G1 provided the highest proportion of negative answers (38%) in both settings. Participants from G3 to G5 countries provided similar percentages of positive responses, ranging from 83% to 87% and 75% to 81%.

FIGURE 2.

Global responses about the availability of education programs on organ donation and transplantation in different scenarios: mean and SD of positive answers. A, Postgraduate education. B, Undergraduate medical school. C, Elementary school. D, High school E, Public.

FIGURE 3.

Survey responses about the availability of education programs on organ donation and transplantation in different scenarios. The x-axis represents the respondents’ groups (G) 1 to 5 according to their mean deceased transplant rate per million population (PMP). The y-axis denotes the responses (%) as either “yes,” “no,” or “unsure.” A, Postgraduate education. B, Undergraduate medical school. C, Elementary school. D, High school. E, Public.

Compared with postgraduate education, lower mean positive answers from all groups (G1–G5) were observed when asking about education on ODT in undergraduate programs in their countries (52.83% ± 21.28%; Figure 2B) and regions (50.63% ± 13.66; Figure 2B). When reporting participants by DD rates, those from G2 to G5 countries provided positive answers, ranging from 56% to 66% in the first set of responses (countries; Figure 3B1), and 53% to 61% in the second set (regions; Figure 3B2). Respondents from G1 provided the highest proportion of negative answers (73% and 62%). It is important to note the level of unsure answers that ranged from 8% to 14% in the first set (Figure 3B1), and 11% to 19% in the second (Figure 3B2).

Educational Programs in Elementary (Primary) and High Schools

The presence of educational programs on ODT for elementary school children is depicted in Figure 2C and separated by DD rates (G1–G5) in Figure 3C1 for the countries and in Figure 3C2 for the regions. Very low percentages of positive responses were observed, with mean values around 14% for both settings (Figure 2C). When evaluating answers according to their groups (G1–G5), both sets of questions regarding countries and regions were numerically similar (Figure 3C1 and 2). The highest percentages of positive answers were provided by respondents from G4 countries (22%, 19%), from G5 countries (20%, 17%), and from G2 countries (19%, 18%). The lowest percentages of positive answers were provided by respondents from G1 countries (4%, 8%) and from G3 countries (5%, 8%). A lack of educational activities on ODT in elementary schools, both in countries and regions, ranged from 50% to 88%. Between 18% and 30% of respondents in groups G2–G5 expressed uncertainty about the availability of education on ODT.

The availability of educational programs on ODT for high school students is depicted in Figure 2D, and separated by DD rates (G1–G5) in Figure 3D1 for countries and in Figure 3D2 for regions. The global mean percentages of positive responses were slightly higher than previously reported for elementary schools, at 24.57% and 25.72% for countries and regions, respectively (Figure 2D). When evaluating the data by DD rates (G1–G5), answers to questions about educational programs in their countries were very similar to the regions. Respondents from G5 and G4 countries provided the highest percentages of positive answers (ranging from 32% to 36%), closely followed by those in G2 and G3 (ranging from 19.17% to 27.40%; Figure 3D1 and 2). Those from G1 gave the highest percentage of negative answers (80.77%).

Public Education on Organ Donation and Transplantation

The descriptive statistics (mean and SD) of global positive responses are depicted in Figure 2E. The response for the countries was 58.85% ± 16.66%, and for the regions was 57.23% ± 16.41%. Regarding education in their countries, respondents from G4 and G5 gave the highest percentages of positive answers (72.22% and 70.37%, respectively), closely followed by those in G2 and G3 (Figure 3E1). Those from G1 gave the highest percentage of negative answers (65.38%). A very similar scenario was found when analyzing the data by regions.

DISCUSSION

To the best of our knowledge, this is the first international survey on education on ODT, starting from primary school to the public and future healthcare professionals. The most important features of this article are the identification of global education deficits (lack of 100% of positive responses) and the disparities in how different countries educate their citizens about ODT. Specifically, we found that a nation’s DD rate is an indicator of whether formal education on ODT is available. However, even countries in the G4 and G5 classifications (higher DD rates) identified areas for improvement, such as incorporating ODT education into undergraduate medical curricula and into elementary and high school programs. These significant gaps were evident at every level we studied, from medical schools to public awareness campaigns.

It was surprising to observe that the availability of educational programs in postgraduate education on ODT and in undergraduate medical universities did not achieve 100%. Some associations or medical societies offer training on the basic concepts of transplantation and/or organ donation to physicians interested in these topics. Examples of these organizations include the TTS,⁷ the European Society for Organ Transplantation,⁸ the American Society of Transplantation,⁹ and the Donation & Transplantation Institute.¹⁰ However, as these courses are optional, if there is no interest from the relevant parties, unawareness of the availability of these resources, or even language barriers, the information will not be disseminated. Concerningly, the low percentage of respondents who reported education programs on ODT within the medical curriculum at universities is notable. Important areas for knowledge improvement, reflection, and discussion are needed during undergraduate medical school that will be used in their future practice. How can we expect to increase the number of potential donors if future physicians cannot identify them or consider the importance of organ donation and its impact on the healthcare system? For example, they will not be aware that kidney transplantation provides better long-term survival and is less expensive than dialysis.

Global results showed that countries from all DD levels evaluated together had critical needs in terms of the low percentage of educational programs on ODT for schoolchildren (both in elementary and high school). The importance of educating children on these topics has been described, in some instances, starting as early as 6–8 y old,² and in others, considering the ages of 10 or 11¹¹ to be optimal. Children and adolescents may become effective ambassadors for change, as they become more confident discussing these topics¹² and are more likely to register as donors.¹³ Also, they may be future donors or transplant recipients, future members of a family with a potential donor or transplant recipient, future physicians, or may work on improving the laws and regulations for ODT. Therefore, teachers must be provided with support for their classes. For example, TTS offers a free online program in English, open to TTS and non-TTS members, as well as to the general public, available for use and translation into other languages, free of copyright, called “Connecting D.O.T.S” (Donation and Organ Transplantation for Schools), which provides materials for teachers, students, and parents from any part of the world.¹⁴ Three of its modules in DonorFacts were based on the Dutch program, Donorwise,¹⁵ an educational initiative led by Prof. Marion Siebelink. Public awareness and/or school education is available at various transplantation societies, organizations, and foundations.^16-19 Also, there is literature specific to explaining ODT to young children. Dr William Wall, a retired Canadian surgeon, wrote a storybook, “The ant who needed a transplant.”¹⁶ Transplant associations should propose to each of their members that they advocate and volunteer to teach once a year in any school to increase awareness, which would be an investment for the future. For example, the Sociedad Argentina de Trasplantes is working on an initiative that encourages its members to donate 1 h of their time each year to teach “Donation and Transplantation” at a school, a program led by Drs G. Gondolesi and C. Diaz (unpublished, personal communication). If other national or regional transplantation societies adopt this concept, most schools will be covered.

International campaigns such as “World Transplant Day” or organized activities for the transplant community like “World Transplant Games”²⁰ aim at increasing awareness about the benefits of transplantation and encouraging community support and networking. However, as observed in our survey, public awareness regarding ODT needs improvement, especially in countries with low DD. To reach more people concerned about ODT, we can consider adopting low-cost, digital, and scalable solutions, such as online modules, gamified learning platforms, and social media campaigns, to increase awareness and engagement.

This study has some limitations that we acknowledge. One is the small percentage of answers received on the education section of the global survey. Since the TTS membership (excluding pediatric health care professionals s) is close to 6060, we estimated a 7.3% (438/6060) and 71% (311/438) response rate. Another limitation is the sampling method, which relies on distributing the survey through professional transplant societies, likely introducing selection bias by overrepresenting the perspectives of actively involved transplant physicians and surgeons, potentially overestimating the true availability of educational programs. Furthermore, the reliance on subjective respondent perceptions rather than an objective audit may also be a source of information bias, as individuals may be unaware of initiatives outside their immediate purview. The categorization of countries by a single metric of DD rate, while relevant, may mask significant intranational heterogeneity and does not account for other influential cultural or socioeconomic confounders. Finally, the cross-sectional design provides a snapshot in time and does not establish causality.

It is worth noting that nearly a third of the total number of 438 participants failed to answer questions related to educational programs on ODT. This omission may suggest a gap in professional awareness of such educational programs.

We acknowledge these limitations; however, we would like to highlight that we obtained answers from 64 countries, incorporating an “Unsure” option to quantify uncertainty, and using a stable, externally validated metric for country classification. We observed a gradient in which reported educational availability decreased across all levels, from postgraduate medical studies to public outreach, in parallel to the decrease in DD rate, underscoring the need for intervention.

Although significant strides have been made regarding the benefits of ODT, tailored educational activities that span multiple age groups and demographics are required. The importance of education on ODT (or the lack thereof) has been clearly described as one of the main limiting factors to establish a DD program in countries that need them the most.^21-23

We recognize that education on ODT is based on several pillars, including economic factors, legal and religious aspects, and the formal education of healthcare professionals in each country. An excellent recent example of the benefits of integrated educational programs in ODT to advance DD comes from the United Arab Emirates with its Hayat Program, coordinated by the Ministry of Health and Prevention.²⁴ This program includes healthcare professionals training, integration of education on ODT into healthcare professionals’ curricula, partnerships with religious leaders, and public awareness campaigns.^24,25 These efforts resulted in an increase in DD rate from 0 in 2016 to 11.5 PMP in 2024, as per information provided at GODT.²⁶

The observations derived from the answers received led us to propose a “Call to Action” to advance a multipronged approach to addressing the education gaps identified in this international survey. As such, we are enumerating a series of recommendations.

EXPERT CONSENSUS ON THE OPPORTUNITIES FOR EDUCATION ON ODT

• We recommend that government and nongovernment agencies develop context-specific national and regional campaigns to improve ODT awareness and knowledge among the public.

• We recommend that national and regional ministries of education, school education boards, or education institutions consider incorporating education on ODT into school curricula.

• We recommend consulting with religious leaders to create avenues for an open dialogue with transplant experts that could address religious barriers or misconceptions related to ODT.

• It is our strong recommendation that medical universities should implement ODT curricula in their pregraduate and postgraduate programs, continuing professional development, or microcredential courses.

• Healthcare professionals and societies should consider launching different certification programs covering a wide range of legal, ethical, diagnostic, clinical, and surgical areas related to challenges in ODT. Also, it would be important to promote the involvement of their members in educational activities in ODT for the general public.

• Healthcare institutions may consider implementing established standardized programs to improve awareness among the healthcare workforce.

We hope that with these data and recommendations available, countries with active DD programs will enhance them through education, and countries that face challenges with their DD programs will invest time and effort to encourage them, with education being the first step forward. We look forward to helping create a culture of ODT.

ACKNOWLEDGMENTS

The authors acknowledge the active participation of international professionals from around the world who were keen to provide their time and experience to help understand their actual situation, the TTS Executive, the TTS Council, the TTS Ethics Committee, and the TTS international headquarters for reviewing the survey and for their support; Dr Francesca Luconi (Continuing Professional Development, Faculty of Medicine, McGill University) for reviewing the survey; and Dr Sonicki Zdenko and Dr Adrian Gorseta (University of Zagreb) for their initial analysis of the data.

APPENDIX

TTS Working Group on Access to Transplantation: Medhat Askar (United States, Stephen Beed (Canada), Marcelo Cantarovich (Canada), Carlos Diaz (Argentina), Kumud Dhital (India), Karen Dwyer (Australia), Mohammad Ghnaimat (Jordan), Gabriel Gondolesi (United States), Nithya Krishnan (United Kingdom), Vivek Kute (India), Marti Manyalich (Spain), Milagros Samaniego (United States), Peter Stock (United States), and Jean Tchervenkov (Canada). Representatives of the participating societies/organizations (at the time of the creation of the survey): Mario Abbud-Filho (Sociedad de Trasplante de América Latina y el Caribe), Curie Ahn (Asian Society of Transplantation), Ban-Hock Tan (Transplant Infectious Diseases—TTS Section), Antoine Barbari (Middle East Society of Transplantation), Stephen Beed (International Society of Organ Donation Professionals—TTS Section), Marina Berenguer (International Liver Transplant Society), Beatriz Dominquez-Gil González (Organización Nacional de Trasplantes), Lara Danziger-Isakov (International Society for Heart and Lung Transplantation), Hiroto Egawa (Japan Society of Transplantation), Gustavo Ferreira (Associação Brasileira de Transplante de Órgãos), Paola Garcia-Padilla (Asociación Colombiana de Trasplantes de Órganos), John Gill (American Society of Transplantation), Gabriel Gondolesi (International Intestinal Rehabilitation and Transplant Association), Jongwon Ha (Korean Society for Transplantation), Wayne Hawthorne (International Xenotransplantation Association—TTS Section), Oscar Imventarza (Sociedad de Trasplante de América Latina y el Caribe), James Markmann (International Society for Pancreas and Islets Transplantation—TTS Section), Klearchos Papas (Cell Transplant and Regenerative Medicine Society—TTS Section), Helen Pilmore (Transplant Society of Australia and New Zealand), Gamal Saadi (African Society of Transplantation), Jeffrey Schiff (Canadian Society of Transplantation), Alejandra Villamil (Sociedad Argentina de Trasplantes), Haibo Wang (China Organ Transplant Response System), and Andreas Zuckerman (International Society for Heart and Lung Transplantation).