EXPERIMENTAL AND CLINICAL TRANSPLANTATION

Key words : Arabic, Attitudes and perceptions of organ donation, Consent, Jordanian population

There is a worldwide shortage of organs for donation. In the United Kingdom in 2016, there were 457 people who died while awaiting transplant.¹ As a result of this shortage, many patients awaiting transplant may experience a reduced quality of life; in addition, health services must manage the high cost of life-extending treatments such as dialysis. A central focus to understanding the reasons for this shortage of available organs is to assess the nature of the attitudes toward organ donation and trans-plantation so that strategies can be implemented to improve the rate of donation.²

Of particular interest, and of particular consequence, are attitudes toward the opt-out system for organ donation. In several countries, debate is ongoing regarding the attributes of an opt-out system of organ donation, under which consent to donate is presumed and any objection to this must be registered (in order to opt out). An opt-out (presumed consent) system has been presented as a means to increase the number of available donor organs and to increase the willingness of individuals to donate their organs or those of family members. However, there is some evidence that governmental and health care proposals to adopt such a policy may not have widespread public support and may possibly have the unintended effect to discourage donation.³

Several factors likely affect donation rates.^4,5 Exploration of the influence of culture on attitudes toward organ donation will facilitate development of materials to promote support for organ donation. For example, understanding the perspectives of people from different religions may facilitate the deve-lopment of effective instruments and methods to promote favorable attitudes within these groups.⁶ Although previous studies have suggested marked national and cultural differences in attitudes toward organ donation, these comparisons remain problematic because of the wide range of questions posed to the participants.

Presently, no validated instrument exists to explore attitudes toward organ donation. In this study, we present an analysis of a large sample of data to validate such an instrument to improve understanding of perceived barriers to donation among a selected group of adults in Jordan as a step toward increasing donation rates.

Materials and Methods

Materials and procedure
A questionnaire consisting of 48 questions divided into 5 sections has been used previously in the UK to assess attitudes of young adults toward organ donation and transplantation,⁴ and we adapted this tool our present study. The 5 sections were as follows (1) demographic information, (2) knowledge about organ and tissue donation and transplantation, (3) attitudes toward organ donation, (4) attitudes toward organ transplantation, and (5) reasons for these attitudes.

The questionnaire was translated from English to Arabic, then back-translated by a different translator, after which the 2 versions were compared to establish the new Arabic version of the questionnaire, which was piloted with 20 participants to confirm the clarity of the content.

An online format for the questionnaire was formulated using Google Forms, and the link was posted on the Al-Zaytoonah University (Amman, Jordan) website. The questionnaire link was also distributed through various Jordanian Facebook groups, and group members were encouraged to forward the questionnaire in an attempt achieve wide distribution. The participants we enrolled were Jordanian adults (≥18 years). To ensure the fulfillment of the inclusion criteria, questions about age, area of residence, and nationality were included in the questionnaire. The questionnaire included closed-ended questions and 5-point Likert-type questions, and the score scale ranged from 1 for “strongly disagree” to 5 for “strongly agree” for all items except for the following items, for which reversed scoring was used: “My religion does not agree with organ donation or transplantation,” “I have a cultural belief that my body should be kept intact after death,” “I have a fear that my body will be disfigured if I donate my organs, therefore it makes me less likely to donate my organs,” “I have a fear of surgical procedures,” “I distrust the health services,” and “My family does not agree with organ donation.”

The questionnaire was then sent to an additional 50 participants who completed the questionnaire to evaluate test-retest reliability. To prevent duplicate submissions and ensure test-retest reliability, email addresses were collected.

All the participants provided informed consent to participate in the study, and ethical approval was obtained from the institutional ethical committee. The study protocol adhered to the guidelines of the Helsinki Declaration.

Sampling type and sample size
A convenience sampling method was adopted in this study. A participant-to-item ratio of 10:1 was recommended to compute the appropriate sample size for factor analysis.⁷ After we excluded questions on age, area of residence, nationality and other closed-ended questions, the remaining items that were included in the model were 35; thus the required sample size was calculated to be 350.

Statistical analyses
All continuous variables are expressed as means with SD. For categorical variables, frequencies and percentages are reported. We conducted exploratory factor analysis, and its suitability for the study data was confirmed according to the Kaiser-Meyer-Olkin test and the Bartlett test of sphericity. We examined the parallel analysis to determine the appropriate number of factors to extract. The correlation matrix indicated a high correlation (r = 0.59) but with acceptable discriminant validity (<0.08). Therefore, direct oblimin rotation was used to conduct. We performed confirmatory factor analysis to verify the fitness of the model and computed model fit indexes, including the comparative fit index, goodness-of-fit index, root mean square error of approximation, and minimum discrepancy per degree of freedom. Sample characteristics were evaluated with a t test or 1-way analysis of variance (ANOVA). Repeated-measures ANOVA was conducted to evaluate the differences between factors. The participants were assigned to high-level and low-level groups according to their scores in each of the 3 generated factors based on mean scores; that is, those who scored above the mean were assigned to the high-level group, whereas those who scored below the mean were assigned to the low-level group. We conducted multiple binary regressions to evaluate variables associated with the score levels for each of the 3 factors. The independent variables included age, employment status, education level, awareness of the proposed opt-out system, knowledge of someone who received an organ for transplantation, knowledge of someone who donated an organ, and participants’ religion. Internal consistency was evaluated by calculating the Cronbach α value, and the test-retest reliability was measured with the Pearson correlation. We used SPSS software (version 23) to analyze the data.⁸

Data availability
The data that support the findings of this study are available online at the Mendeley Data website (https://dx.doi.org/10.17632/wnc8s34x83.3).

Questionnaires were completed by 404 participants (264 female, 140 male). Participants had a mean (SD) age of 30.43 (11.02) years (range, 18-80 years). Of these, 37.8% were educated to high school level, 5.9% had a 2-year diploma, 39.5% had a bachelor’s degree, and 16.3% had a postgraduate education. Most participants (90.4%) self-identified as Muslim, with the next highest group as Christian (5.9%).

Validity and reliability of the instrument
Exploratory factor analysis was conducted to determine the best construct for the study data. The items “My religion does not agree with organ donation or transplantation” and “What is your general attitude toward donating family members’ organs” did not reach the loading cutoff point of 0.4, and therefore these items were removed from the analysis. The exploratory factor analysis was rerun without these items, and the parallel analysis suggested that a 3-factor model was the most suitable for the study data. A Kaiser-Meyer-Olkin value of 0.954 supported the adequacy of the sample, and the significance of the Bartlett test of sphericity(χ² = 15070.72; P < .001) validated the results of the exploratory factor analysis.

Factor names, statements, factor loading, com-munalities, and the Cronbach α value for the 3-factor model are shown in Table 1. The first factor, “Organ Donation Attitude,” comprised 16 statements designed to measure various aspects of a respondent’s perception of organ donation, and the communalities ranged from 0.36 (for item “Do you agree with the opt-out system for organ donation?”) to 0.88 (for item “What is your attitude toward donating your small bowel?”), with a Cronbach α of 0.97, which was unaffected by the deletion of any item, and a total mean of 3.71 (SD 0.95). For the second factor, “Organ Transplantation Attitude,” the communalities ranged from 0.67 to 0.89 and the factor loading values were from 0.83 to 0.93, with a Cronbach α of 0.98 and a total mean of 3.86 (SD 0.81). The loading for the third factor, “Fear of Health Outcomes,” ranged from 0.41 to 0.69, and the communalities were from 0.31 to 0.52, with a Cronbach α of 0.58 and a mean of 3.01 (SD 0.73). Results from the confirmatory factor analysis indicated that the suggested model was representative of the data. The model fitness indexes were as follows: comparative fit index of 0.91, goodness-of-fit index of 09, root mean square error of approximation of 0.06, and minimum discrepancy per degree of freedom = 3.2. The Pearson correlation showed high test-retest reliability (all had r > 0.8). The Pearson correlations indicated favorable significant correlations between the 3 generated factor scores (all P < .001).

Repeated-measures ANOVA indicated significant differences between the 3 generated factor scores, with P < .01 in all the pairwise comparisons. The significantly highest factor score was for the Organ Transplantation Attitude factor, followed by the Organ Donation Attitude factor, whereas the least score was for the Fear of Health Outcomes factor.

Preliminary analysis indicated that there were no significant associations between sex, education, or employment status for most of the responses. The approval rating for donation of a family member’s organs was lower among employed respondents compared with students or unemployed respondents.

The results of the binary regression models indicated that the only independent variables that were associated with any of the 3 generated factors were religion and had heard of the proposed opt-out system and organ donation attitude factor score as being a Muslim decreased the odds of being the high score group when compared with the Christians/Other (odds ratio, 0.21; 95% CI, 0.07-0.62; P < .01). There was a lower likelihood of assignment to the high-score group for respondents who were unaware of the proposed opt-out system compared with respondents who were informed of this option (odds ratio, 0.47; 95% CI, 0.23-0.93; P = .03).

As shown in Table 2, most respondents had heard about organ donation and organ transplantation. However, most respondents had not heard about an opt-out system. Five of the 404 participants reported that they had donated an organ.

Statistical t tests of the attitudes toward organ donation and receiving organs scores showed no significant differences between participants who had heard of the proposed opt-out system and those who had not heard of the opt-out system.

As show in Table 3, most respondents had a generally favorable attitude toward organ donation for transplantation, and most respondents did not consider organ donation to be in conflict with their religious or cultural beliefs.

This study had 2 aims. First, we sought to develop a standardized questionnaire that could be used to make comparisons between different groups in relation to their attitudes toward organ donation. Second, we sought to examine the attitudes toward organ donation in Jordan. This is, to the best of our knowledge, the first study to survey opinions in the general population regarding organ donations in Jordan. The Arabic version of the questionnaire was validated and showed good model fitness, internal consistency, and test-retest reliability. The final model is a 3-factor construct composed of 32 items with 3 factors, ie, Organ Donation Attitude, Organ Transplantation Attitude, and Fear of Health Outcomes.

We found that most respondents (72%) had a favorable attitude toward donating their organs; this was similar to the attitudes reported in the UK using the original English questionnaire, which reported that almost two-thirds of participants agreed with donating their own organs. Despite this similarity in favorable attitudes toward organ donation, the actual number of registered donors in Jordan compared with the UK is significantly lower. The number of registered donors in the UK is 24 941 804 (38% of the population).⁹ In contrast, the number of registered organ donors in Jordan according to the International Registry in Organ Donation and Transplantation is only 251 (26.14 per million population; 0.0025% of
the population), and only 216 (22.5 per million population) are registered for kidney donation.¹⁰ Such rates could be the result of a low awareness of donation and/or a less-developed organ donation program in Jordan. This is manifested in the long wait lists for organ donations; for example, over 4500 patients are on the wait list for kidney transplants in Jordan.¹¹

The low number of donors is a substantial burden on the health systems and economy of Jordan. For example, in 2015, the total number of patients treated and registered for dialysis was 4935.¹² The cost per session of hemodialysis was USD $72, with an annual cost per patient of USD $9976. The total cost of dialysis to the Ministry of Health was USD $17.70 million per year.¹³ Additionally, the quality of life for Jordanian patients who experience renal failure remains persistently low because of the lack of sufficient donors.¹⁴ This shortage of donors is of particular interest because there is a potentially large pool of donors in Jordan because of the high rate of road traffic accident deaths in this country, and road traffic deaths are an important source for organ donation programs.¹⁵ According to the latest World Health Organization data, road traffic accident deaths in Jordan reached 1913 with a prevalence of 26.3 per 100 000 population,¹⁶ almost exactly 10 times the rate of those registered for organ donation.

Most of the Muslim respondents in our sample approved of organ donation (71%), which is consistent with previously published results that found a high percentage of Muslim respondents willing to donate their organs. Additionally, most respondents (69.9%) felt that their religious beliefs did not conflict with organ donation, as reported previously.^17,18 Nevertheless, the binary regression results that we reported here showed that Muslim respondents had significantly lower scores for the factor of Organ Donation Attitude compared with participants from other religions. This is in agreement with other studies that have reported Muslim respondents were less likely to donate an organ due to their religious beliefs.^19,20 However, due to the small sample of non-Muslim respondents in the present study and in the Jordanian population in general, we recommend a cautious interpretation of these findings. The contradictory findings reported in the literature about Muslim attitudes toward organ donation could be a result of the broad scope of perception of drawn from Islamic scriptures, alongside other socioeconomic factors.²¹

The scores for the Organ Transplantation Attitude factor were significantly higher than the scores for the Organ Donation Attitude factor. Previous studies have reported that people are more willing to receive an organ than to donate an organ.^4,22

The significant difference between the number of people willing to donate an organ and the actual number of registered donors emphasizes the urgency for improvements to the present organ donation system. In fact, many of the participants have expressed personal interest in organ donor registration but were uncertain of the process, which indicates the need for improvements to the donor registration process in Jordan, as well as the potential for a campaign to improve awareness to better educate the public with regard to the registration process and the benefits associated with organ donation. A solution for this gap could be the establishment of an opt-out system, as some studies have found increased donation rates after introducing opt-out legislation.²³ However, other work has concluded that increases in donation rates are more likely the result of a range of other factors,²⁴ such as the availability of staff trained in organ donation⁵ or incentives to donate.²⁵

The demographic data of our sample suggest a big diversity in age, occupation, and education, although there was a skew toward more highly educated individuals, who may be more or less likely to donate than the general population. Another source of bias may be that people who are interested in organ donation might have been more motivated to participate. However, the percentage of people who reported that they agree with donating an organ was comparable with previous studies.^17,18

One further surprising finding was that one-third of respondents reported some degree of distrust in health services. The reasons for this are unclear but may act as a barrier to engagement with trans-plantation. Further work is needed to explore this finding in more detail.

For the present study, we developed an Arabic version of the Attitudes Toward Organ Donation questionnaire, which we believe will be useful for comparisons of attitudes toward organ donation across the Arab-speaking world. In addition, we have explored the attitudes toward organ donation in Jordan. Our work has clarified that knowledge of organ donation, particularly the opt-out system, is poor even among educated people in Jordan, and therefore national efforts are required to develop this.

Volume: 20 Issue: 6 June 2022

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