Attitude of Jordanians towards a new enactment for an opt-out organ donation system: a cross-sectional study

STRENGTHS AND LIMITATIONS OF THIS STUDY

  • Using a stratified sample collection method and incorporating a large sample size enhanced the diversity of the sample, thereby increasing the validity and relevance of the findings.

  • The well-structured and validated questionnaire covered a wide range of aspects related to organ donation and regulations, ensuring that key variables were addressed.

  • The rigorous analytical approach employed to interpret the results facilitated the derivation of robust conclusions regarding organ donation.

  • The study’s cross-sectional design limits the ability to establish causal relationships.

  • Different types of bias, such as selection and information bias may affect the generalisability of the study findings.

Introduction

Organ donation is the act of giving one or more of your organs to someone in need of a transplant. This generous and selfless decision can save or improve the lives of people suffering from organ failure and some diseases, giving them a hope to survive. In several medical conditions such as organ failure, donation is considered the only way to save the lives. For decades, Jordanian healthcare institutions are focusing on reducing the number of patients who struggle. The first organ donation in Jordan was carried out in 1979, primarily for deceased-donor kidney transplants, that followed by cornea transplant, and in 1985, successfully carried out the country’s first heart transplant. In April 2010, the Jordanian Center for Organ Transplantation Directorate was founded and became operational in October 2011.

Since then, many campaigns to promote organ donation have been held and programmes have been implemented to regulate and facilitate deceased-donor organ transplant.1

In the Middle East, there is an estimated average of 200 patients per million population (pmp) waiting for renal transplantation. In addition, there is 10%–15% annual death rate on dialysis and greater death rate for patients on the waiting lists for liver and heart transplant because of the absence of artificial means to support those patients while awaiting an organ transplant.2 That is attributable to the extremely low donation rate in the Middle East. Despite having a well-developed healthcare infrastructure, the number of organ donors registered in Jordan in 2017 was relatively low, with only 316 donors registered. Out of these, 65 were deceased donors, and 251 were living donors, for a living donor rate of 26.14 pmp and a deceased donor rate of 6.91 pmp.2 The shortage of donors in Jordan can be attributed to several factors such as religious misconception, low education levels and inadequate planning by healthcare institutions, and also due to the lack of awareness about the burden exerted on the country to maintain lifelong management for patients with organ failure, such as patients on kidney dialysis.2 One additional major contributing factor to the lack of deceased organs is drug toxicity, a history of ischaemic heart disease and the occurrence of acute kidney injury, all of which are associated with the loss of potential donors before organ retrieval.3 The gap in this area of research lies in the lack of research exploring the attitudes of the Jordanian population towards the practicality and effectiveness of introducing an opt-out organ donation system guided by legislative measures. The opt-out systems have been implemented in many countries to increase organ donation rates, including Spain, Austria, Canada and others, that presume individuals are presumed to have consented to organ donation on death unless they have specifically opted out during their lifetime.4 This enactment is believed to increase the overall willingness of individuals to donate their organs.5 However, it is unclear how such a system would be perceived and accepted by the Jordanian population. The conflict exists in justifying the need for this study comes from the significant shortage of organ donors in Jordan despite having a well-developed healthcare infrastructure. Given this, the study aimed to explore the attitudes of the Jordanian population towards the feasibility and effectiveness of implementing an opt-out organ donation system through legislative measures and to assess the potential impact of such a system on organ donation rates in Jordan.

Methods

Study design and participants

This cross-sectional study was conducted between October 2023 and March 2024. This study is an observational cross-sectional study that employed a structured and validated questionnaire (online supplemental file 1).

Supplemental material

The questionnaire was developed and refined by a collaborative effort of the research team, comprising medical students as well as faculty members from various disciplines including anatomy, physiology and neurosurgery at the Faculty of Medicine. Questions were crafted in clear, straightforward language aimed at ensuring clarity and ease of understanding for laypersons. The minimum sample size required was determined to be 190, calculated using EpiCalc 2000 version. This calculation was based on a significance level of 0.05 and a power of 80%. It assumed that the proportion of interest within the population was 50%, with a null hypothesis value set at 40%. The research team collaborated to distribute the questionnaire across Jordan, covering all twelve major cities in the country. The simple random method was used for collecting responses. The inclusion criteria for participation were Jordanian individuals aged 18 years or older who were fluent in Arabic. Participants who did not meet the age requirement or had impaired cognitive abilities were excluded from participation. Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Data collection instruments

To facilitate accessibility and reach, the questionnaire was formatted as an online form using Google Forms and was disseminated through various social media platforms. To ensure linguistic accuracy and cultural relevance, the questionnaire was initially translated from English to Arabic. Subsequently, it underwent a back-translation process conducted by a different translator to verify accuracy and consistency of translation. The questionnaire underwent a validation process through a pilot test, involving a random sample of 30 participants. This test aimed to identify any unclear questions, assess language acceptability and determine the time required to complete the survey. Based on feedback received, three confusing questions were removed, and two were revised for enhanced clarity. Participants who took part in the pilot test were subsequently excluded from the main study.

The questionnaire comprised 33 questions divided into 4 sections, which explored attitudes towards a new organ donation enactment. These sections addressed personal information, knowledge and acceptance of organ donation, religious beliefs related to organ donation and opinions on the new enactment. Likert-type questions were used, employing a 3-point scale with response options as follows: 1 (disagree), 2 (neutral) and 3 (agree).

Procedure

The participants were accessed through distributing a structured and validated questionnaire across Jordan, covering all 12 cities in the country. The questionnaire was formatted as an online Google Form and distributed through various social media platforms. Completed questionnaires were gathered electronically through the online form. Following feedback, necessary revisions were made to the questionnaire before the main study commenced.

Data analysis

The data were analysed using the SPSS software, V.2023, by SPSS. Descriptive statistics, such as mean, SD, frequency and percentage, were employed to summarise the characteristics of the data. For inferential statistics, the χ2 test was conducted to examine the association between different variables. A significance level of p<0.05 was used, with values below this threshold considered statistically significant. This rigorous statistical approach facilitated a comprehensive examination of the data and enabled meaningful interpretation of the study findings.

Results

This cross-sectional study provides valuable insights into the prevalence and factors associated with organ donation. Of the 1146 participants, 689 (60.1%) were women, and 457 (39.9%) were men (online supplemental table 1). The most represented age group was 18–29, comprising 493 (43%) participants. Additionally, 1113 (97.1%) identified as Muslims while 33 (2.9%) identified as non-Muslims. Regarding education level, 92 (8.0%) had Tawjihi or lower education, 97 (8.5%) held a diploma, 788 (68.8%) had a bachelor’s degree and 169 (14.7%) held a master’s or PhD. Moreover, 753 (65.7%) worked in the medical field while 393 (34.3%) were in non-medical fields. The most represented governorates were Amman with 490 (42.8%) participants, Balqa with 455 (39.7%) and Irbid with 79 (6.9%). Among the participants, 420 individuals (36.6%) reported having donated an organ or blood while 217 (18.9%) engaged in awareness campaigns related to organ donation. Notably, 868 participants (75.7%) expressed consensus on the insufficient awareness surrounding the importance of organ donation. Furthermore, 769 individuals (67.1%) acknowledged the scarcity of online platforms facilitating organ donor registration, and 878 (76.6%) recognised a significant deficit in donor numbers compared with the patients awaiting organ transplantation (online supplemental table 2). In discussions with healthcare providers, 138 participants (12.0%) broached the topic of organ donation, whereas only 103 individuals (9.0%) were officially registered as organ donors. Additionally, 776 respondents (67.7%) expressed acceptance of the concept of organ donation, with 634 (55.3%) indicating willingness to enrol themselves and their family members in organ donation programmes. Among the 1146 participants, 621 (54.2%) acknowledged that religion influences their decision regarding organ donation. Furthermore, 717 (62.6%) participants agreed that communication with a religious leader can impact their decision while 775 (67.6%) believed that communication with a trusted organisation can also influence their choice (online supplemental table 3). Additionally, 676 (59%) participants expressed willingness to receive or donate an organ or part of it from/to somebody with a different faith. Moreover, 555 (48.4%) participants believed that their family has a significant impact on their decision while 891 (77.7%) agreed that providing emotional and social support to the donor family increases the donation rate. As expected, 774 (64.9%) participants agreed that organ donation reduces the financial burden on the country.

Supplemental material

Supplemental material

Supplemental material

Furthermore, 192 participants (16.8%) understood the current Jordanian law and policy regarding organ donation while 459 participants (40.1%) agreed to the release of the new enactment (online supplemental table 4). A substantial majority of 808 participants (70.5%) agreed that individuals should be adequately informed about the enactment related to organ donation and presumed consent. Furthermore, 782 participants (68.2%) believed that this enactment would significantly impact the number of donors. On the question of applicability, 440 participants (38.4%) agreed that it should be extended to all age groups. Additionally, 545 participants (47.6%) supported the notion that the enactment should encompass all organs. However, it is worth noting that 518 participants (45.2%) expressed an intention to exercise their right to refuse being considered a donor after death. These diverse perspectives underscore the complexity and nuanced considerations surrounding organ donation policies.

Supplemental material

The χ2 test was conducted to examine the association between different variables. As shown in online supplemental table 5, understanding of the current Jordanian law and policy regarding organ donation demonstrated a significant association (p=0.000) with participation in awareness campaigns. Conversely, the occupational field showed no significant association with it. The agreement for the release of a new enactment that presumes everyone to be an organ donor after their death, unless they actively declare otherwise in their life, was not significantly associated with gender, age, religion, educational level and occupational field (p=0.142, p=0.117, p=0.579, p=0.610 and p=0.481, respectively). However, it showed significant associations with participants who had already donated an organ or blood, with 47.6% of them agreeing (table 1), as well as with those who had previously participated in awareness campaigns about organ donation and its importance, with 59% of them agreeing, and with participants who had discussed organ donation with their healthcare providers, with 61.6% of them agreeing (p=0.000, p=0.000 and p=0.000, respectively).

Supplemental material

Table 1

The agreement with the enactment and its correlation

Furthermore, it is worth mentioning the significant association between agreement to the enactment and the overall acceptance of the idea of organ donation, as 50.6% of participants who accepted the idea of donation also agreed to the enactment (p=0.000). Additionally, there is a significant association with the belief that organ donation can decrease the financial burden on the country, as 50.7% agreed (p=0.000).

There is an insignificant association between educational level and occupational field with the impact of enactment on a number of donors (p=0.209, p=0.052, respectively) (see table 2).

Table 2

Agreement on the impact of enactment application on the number of donors

Interestingly, gender and age were significantly associated with applying the enactment to all age groups (p= 0.020 and p= 0.000, respectively). However, there was an insignificant association with education level (p= 0.201) and occupation field (p= 0.640) (see table 3).

Table 3

Agreement on the application of enactment to all age groups

Pointing the enactment to all organs was significantly associated with the religious effect on the decision regarding organ donation (p=0.000). However, it was insignificantly associated with occupation field (p=0.208) and religion (p=0.452) (see table 4).

Table 4

The enactment’s applicability to all organs and its correlation

Refusing to be a donor after death was significantly associated with religion, occupation field and awareness about organ donation (p=0.001, p=0.006, p=0.001, respectively). However, there was a significant association with education level (p=0.081) (see table 5).

Table 5

Correlation of participants regarding refusal of organ donation after death

Discussion

The study revealed several key findings regarding participants’ attitudes and behaviours towards organ donation in Jordan. Youth emerged as the most active age group in participating in the questionnaire while a significant portion of participants hailed from the medical field. A majority of respondents displayed awareness of the significance of organ donation, yet the percentage of individuals registering for donation or engaging in awareness campaigns remained low. Furthermore, discussions about organ donation by healthcare providers were lacking. Participation in campaigns or receiving guidance from healthcare providers consistently bolstered support for the implementation of new legislation and regulations regarding organ donation. Notably, participants from the medical field expressed confidence in the legislation’s potential to substantially impact donor numbers. Additionally, individuals aged over 40 and those with higher educational attainment exhibited a more positive attitude towards extending the legislation to all age groups. However, despite their acceptance of organ donation in principle, approximately half of the participants expressed disagreement with extending the legislation to cover all organs. The current study sheds light on the significance of organ donation and underscores the necessity for new legislation aimed at bolstering organ donation rates and effecting a notable increase in both donors and recipients. It was anticipated that the youth would be the most active age group in participating in the questionnaire, possibly due to the accessibility of online surveys and the necessity of basic skills to use smartphones or computers. Conducted in Jordan, where the majority of the population is Muslim, it was unsurprising to find that the majority of participants belonged to the Muslim faith. Given the medical nature of our survey, it was expected that a significant portion of participants would come from the medical field, as this topic aligns closely with their expertise and affiliations. We must acknowledge that the majority of participants were cognizant of the significance of organ donation, yet there remains a critical need to translate this awareness into tangible actions. Despite this awareness, the percentage of individuals registering for organ donation or actively participating in awareness campaigns remains low. This can, in part, be attributed to the scarcity and passive role of official media in educating the public about the importance of organ donation. Additionally, the lack of discussion about organ donation by healthcare providers may contribute to this substantial gap in knowledge and its associated consequences. Approximately one-third of participants engaged in awareness campaigns regarding organ donation in Jordan demonstrated comprehension of the current legal framework and policies governing organ donation. This underscores the pivotal role of disseminating accurate information and fostering awareness to promote the adoption of organ donation practices. Effective distribution of knowledge through such campaigns is instrumental in broadening public understanding of organ donation and motivating individuals to participate in this altruistic endeavour. Having been a donor previously, participating in a campaign, or receiving guidance from a healthcare provider has consistently bolstered support for the implementation of new legislation and regulations pertaining to organ donation. This underscores the significance of non-academic initiatives and underscores the imperative for formal authority within the health ministry to prioritise discussions about organ donation as a key component of the patient care process during consultations or admissions. This surge in receptiveness to the enactment (61.6%) underscores the significance of such discussions, as they afford individuals the opportunity to voice concerns, obtain precise information and ultimately make informed decisions guided by medical expertise. Interestingly, approximately two-thirds of participants are cognizant of the financial implications that a severe shortage of organ donors may impose on the country, underscoring the significance of enacting new legislation to address this issue. Shepherd et al
6 assert that mitigating the financial burdens associated with organ donation can yield substantial economic benefits for the nation. This can be achieved by enhancing access to transplantation services and diminishing reliance on expensive long-term treatments, consequently reducing overall healthcare expenditures and enhancing economic efficiency. The study highlights that an enhanced rate of organ donation is contingent on the legal framework in place. Notably, approximately 72.5% of participants from the medical field expressed confidence that implementing this legislation would substantially impact the number of donors. Their perspective stems from their regular engagement in transplant medicine, leading them to believe that enacting this legislation could alleviate the burden of patients on transplant waiting lists, thereby reducing the number of individuals succumbing while awaiting transplantation.7 In this study, individuals aged over 40 and those with higher educational attainment exhibited a more positive attitude towards extending the enactment to all age groups. This suggests that as individuals mature and acquire more knowledge, they tend to seek pragmatic solutions, prioritising objective considerations over emotional responses. The inclusion of multiple age groups in the enactment is perceived as beneficial, potentially leading to better outcomes. Additionally, contrary to findings in prior research,8 men demonstrated greater acceptance of extending the enactment to all age groups compared with women. This variance could be attributed to cultural norms that place greater emphasis on communal sacrifice, or it may reflect inherent differences in decision-making tendencies between genders. Regarding the influence of religion on decisions regarding organ donation, approximately half of the participants (53.1%) expressed disagreement with extending the enactment to cover all organs, despite their acceptance of organ donation in principle. This hesitancy may stem from religious beliefs that forbid the donation of certain organs, such as the ovaries, in order to prevent potential issues related to parentage confusion. Roughly 44.0% of respondents decline to become organ donors after their death, that maybe because they lack awareness about the importance of organ donation. This lack of understanding can arise from multiple sources, such as inadequate education, limited public awareness efforts, cultural beliefs that restrict discussions about organ donation and a general lack of exposure to information about the process and its significance. The strength of this study lies in the study approach in which the stratified sample collection method was used, in addition, the large population size provided a broader range of sample diversity that enhanced the validity and relevance of the study findings. Further, the well-structured and validated questionnaire covered many aspects of organ donation and regulations. The analytical approach we followed to interpret results produced solid conclusions about organ donation. However, this study had some limitations; the cross-sectional study’s design precludes the possibility of causal correlations. Different types of bias such as selection and information bias affected the generalisability of the study findings. The selection bias resulted from the differences in the characteristics of the participants. The information bias resulted when the participants were not certain about their answers or information. In conclusion, despite that most people understand and accept the idea of organ donation, there is a sparse number of people who are prepared to donate their own organs. We highly recommend the collaboration of different national organisations to spot the light on organ donation through educational campaigns, upgrade online registration systems, increase healthcare provider engagement, work with religious communities and push for supportive policies.

Data availability statement

Data are available on reasonable request.

Ethics statements

Patient consent for publication

Ethics approval

This study involves human participants and was approved by Institutional Review Board at Al-Balqa Applied University (Approval No: 2023/21BAT). Participants gave informed consent to participate in the study before taking part.

This post was originally published on https://bmjopen.bmj.com