KNOWLEDGE, PERCEPTION, AND ATTITUDE OF HEALTHCARE PROFESSIONALS TOWARDS ORGAN DONATION IN LEBANON: A TERTIARY CARE CENTER SURVEY

SPECIAL REPORT ORGANS, TISSUES & CELLS, (17), 169-175, 2014 KNOWLEDGE, PERCEPTION, AND ATTITUDE OF HEALTHCARE PROFESSIONALS TOWARDS ORGAN DONATION IN LEBANON: A TERTIARY CARE CENTER SURVEY Talia Ariss 2, Sima Naamani 1, Hani Tamim 3, Maria Karam 1, Mohamad Khalife 1, Rana Sharara-Chami 1 1 Department of Pediatrics and Adolescent Medicine, American University of Beirut Medical Center, Beirut, Lebanon 2 Department of Psychology, American University of Beirut, Beirut, Lebanon 3 Department of Internal Medicine, Biostatistics Unit, Clinical Research Institute, American University of Beirut, Beirut, Lebanon Keywords - Organ donation, transplantation, Middle East, knowledge, attitude Received October 10 th, 2014, revised November 28 th, 2014, accepted November 28 th, 2014 Summary - Background: Organ transplantations in the Middle East are limited because of ethical, legal, social and religious concerns. In Lebanon, organ transplantation centers existtoday across the country alongside associations promoting organ donation. Nevertheless, policies allowing the identification of potential donors are still lacking and the attitudes of healthcare providers themselves remain divided. Although studies conducted in Qatar and Turkey show effort towards the promotion of organ donation, in Lebanon research remains minimal.this study investigates the knowledge, attitudes, and perception of health care workers on the subject of organ transplantation and demonstrates their lack of knowledge about the topic. Methods: Emails were sent to all healthcare professionals at the American University of Beirut Medical Center asking them to respond to a 19-item questionnaire. 167 participants replied, thus yielding a response rate of 11.3%. Data pertaining to the participants demographics educational levels knowledge and attitudes towards the topic was collected. Results: A score, looking at the participants ability to enumerate organs that can be donated was used to form the knowledge about organ donation variable. The cross tabulation of that variable with those of demographics, education, and attitude didn t render any statistically significant results. Among attitude variables, however, religious reasons were noted as the number 1 reason for professionals to be against/undecided about transplantation. Conclusion: This lack of significance shows that, regardless of their expertise and affiliations, healthcare professionals demonstrate a lack of knowledge when it comes to the topic of organ donation. Lack of knowledge about the topic among professionals (even those supportive of the idea) prevents them from promoting organ donation or raising awareness about it. Correspondence: Rana Sharara-Chami, MD, FAAP, Department of Pediatrics and Adolescent Medicine, American University of Beirut Medical Center, P.O. Box: 11-0236, Riad El-Solh 1107 2020, Beirut, Lebanon; e-mail: rsharara@aub.edu.lb 169

Introduction Organ donation has established itself as standard medical care to be offered to patients with terminal, end-stage diseases (1). However, most countries still suffer from a shortage of cadaveric organs because of excess demand and low supply. For instance, in the United States, organ transplantation rates have been steadfast while the waiting lists keep increasing in number (2). More importantly, while on the organ transplant list, around 300 children die each year in the U.S. (2). Similarly, in 2006, in European countries like France, over ten thousand patients were on the waiting list for organ transplantation but less than half the number actually received it (3). In order to compensate for the scarcity of organ donations, and in an attempt to bridge the widening gap between supply and demand, many healthcare professionals are suggesting alternatives to donations after brain death (DBD) through donations after cardiac death (DCD) (4). With the right safety procedures, the development of organ preservations methods, and the progress in immunosuppressant medications, it is expected that the number of acquired organs would increase by 15 to 25% (4). Programs for organ donations after cardiac death have already been established in several countries such as the United States, the United Kingdom, Spain, the Netherlands, and Denmark (1). In the Middle East, organ transplantation activities only started in the 1970s (1). These transplantations were performed with the use of living donors because the idea of collecting organs from patients who had died from cardiac arrest or brain death had faced sturdy opposition (1). At the time, few Arab countries have resorted to such transplantation methods because of ethical dilemmas that come along with this practice, legal and social conflicts, as well as rigid religious beliefs (1). However nowadays, efforts are being mobilized to surpass these quandaries and brain death is now recognized as an irreversible process in the Arab world (1). Lebanon is a small country on the Mediterranean border. The population consists of near equal proportions of Muslim and Christians with a small Muslim predominance. The health care system is variable with social security for most but not all and a big portion of private healthcare. In Lebanon, the first organ transplant occurred in 1972. It was a kidney transplant undertaken with the help of a living donor at Barbir hospital (5). Ever since, organ transplantation centers opened across the country starting in Beirut; the first one being at Rizk Hospital in 1985, followed by Hotel Dieu de France as well as the American University of Beirut Medical Center (AUBMC) in 1997 (5). The last hospitals to establish a transplant center were Hammoud hospital in Sayda and the Islamic hospital in Tripoli, which opened in 2003 and 2004 respectively (5). Many organ transplantation centers opened across the country starting in Beirut (5). These include: the Lebanese Association for Organ and Kidney Donation (ALDOR), and the National Organization for Organ and Tissue Donation and Transplantation (NOOTDT) (5). Although some campaigns have been mobilized to promote organ donations, the NOOTDT was almost never notified of the presence of patients that were likely to be donors (5). This still applies and we believe that one of the main reasons for the observed phenomenon is lack of policies to identify and approach potential donors (5). A research by Schaeffner, Windsch, Freidel, Breitenfeldt, and Winkkelmayer (6) determined the importance of the role that health care professionals hold in the procurement of organs and tissues. Since these experts are the first people to come in contact with a terminal patient and his family, they should be qualified enough to identify a potential donor and find the right time to approach the patient or the family, or consult with organ donation associations (6, 3). A recent study by Alsaied, Bener, Al-Mosalamani and Nour (7) sought to investigate the importance of the degree of expertise and level of awareness among health care professionals on organ donation. The target population of the study included physicians, nurses, and emergency medical services technicians working in Qatar, a Muslim Arab country in the Middle East (7). The authors found that, although the body of medical workers was knowledgeable to some degree about the topic of organ donation, the concept of collecting and giving organs has yet to be integrally accepted. In fact, the health care professionals demonstrated a general positive attitude towards donation and transplantation but when assessed on a more personal level, they were less keen on donating organs. Alsaied et al. (7) therefore stressed on the need to set up educational programs in schools and universities in order to raise awareness via open discussions and conferences about procurement and other procedures of organ donations. Another study carried out in Istanbul (another Muslim but non-arab country in the Middle East) demonstrated similar patterns of attitudes and knowledge towards organ transplantation. The target population included professionals working in the organ donation wings and dialysis units of the healthcare system (8). The authors demonstrated that although most medical workers support the concept of organ donation as a method of treatment, they are often reluctant to be part of the donor pool. The authors suggested that lack of faith in the system is one potential explanation for the discrepancy between beliefs and actions. On the other hand, it was noted that health care professionals who were aware that organ donation is religiously acceptable were more likely to donate their organs (8). Therefore, the authors highlighted the role of religion in determining one s personal decisions regarding organ transplantation and that greater education on reli- 170 T. Ariss et al.

gious stands could significantly increase the donor pool (8). In Lebanon, research on organ donation is scant. The present study aims to investigate the knowledge, attitudes, and perception of health care workers on the subject of organ transplantation and demonstrate that healthcare providers are not knowledgeable about the topic as much as they think they are regardless of their expertise (age, years of service ) thus raising awareness potentially resulting in optimizing the organ transplantation process. Methods Instruments This non-funded study surveys the knowledge, perception, and attitude of healthcare professionals towards the topic of organ donation in Lebanon. It was carried out between the months of November 2013 and January 2014. After approval from the American University of Beirut s Institutional Review Board, emails were sent to healthcare professionals asking them to respond to a 19-item questionnaire that was created by the principal investigator with the help of the study coordinator and the collaborators. It is based on similar papers in the literature and follows the general knowledge, attitude, behavior pattern usually used in devising similar questionnaires. It includes four main sections that consist of demographic data of participants, their education level and affiliation with the medical school/ center, their knowledge about organ donation, and lastly their attitudes and behavior towards the topic itself. The participant s degree of knowledge on the topic of organ donation was assessed by asking questions such as How knowledgeable do you think you are about the topic of organ donation?, Do you know any association for organ donation in Lebanon?, Do you know where was the first donation was performed in Lebanon?, and finally Do you know which organs might be donated?. Participants objective measure of how actually knowledgeable they were was assessed by taking into consideration that last question. They were considered to be knowledgeable when they managed to correctly list five or more organs that could potentially be used for a transplant. In the same vein, attitudes towards organ donation were determined by directly asking participants whether or not they are in favor of organ donation. If not they were asked to provide an explanation as to why they would oppose it. Furthermore, they were asked more indirect questions such as whether they would accept a donor organ or not if they ever found themselves in the need of one or whether they were acquainted with someone who had received or donated an organ. Finally, participants were asked to rate how religious they were using a religiosity scale. The Likert based scale ranges from 1 to 10 with a reported score of 1 considered to be not religious at all and a reported score of 10 considered to be very religious. In addition, participants were asked to report which religious faith they followed. Subjects Our sample was randomly collected from the population of health care workers at the American university of Beirut Medical Hospital (AUBMC)-) - a tertiary health care center with a transplantation program. A total of N=167 responded to the email by filling out the questionnaire resulting in a response rate of 11.3%. The sample is comprised of 99 females and 68 males. Survey responses were collected from various health care professionals targeting all departments within the hospital including attending physicians, fellows, residents, medical students and nurses. The majority of the study participants werewas of Lebanese nationality and originated from Beirut, followed by Mount Lebanon while the rest were either from the South or the Bekaa area (Table 1). Statistical Analyses Data were entered into a Microsoft Excel spreadsheet and then transferred to the Statistical Analysis Software (SAS), version 9.1, which was used for data management and analyses. Variables were presented as number and percent, and the association with knowledge was assessed using the Chi-square test or Fisher s Exact test, as applicable. A p-value <0.05 was used to indicate statistical significance. Results Though it was expected that demonstrating knowledge regarding the first donation performed in Lebanon would make healthcare professionals more knowledgeable about the subject of organ donation as a whole, results did not support that hypothesis. Comparable expectations were held in terms of finding a correlation between familiarity with organ donation associations in the country and organ donors/receivers on one hand, and general knowledge about the topic on the other. These expectations were not however supported by our results either. In fact, being aware of at least one organ donation association in Lebanon was the sole variable showing only marginal significance (p =.06) in comparison with knowing where the first donation in Lebanon was performed and being acquainted with an organ donor or receiver, both of which yielded highly insignificant results. Such findings are consistent with the discrepancies in the number of knowledgeable and non-knowledgeable subjects in each variable: out of the 41 subjects who were familiar with an organ donation association, 16 were shown, perception, and attitude of healthcare professionals towards organ donation in Lebanon 171

Variables Age Gender No knowledge 0-30 years 23 (59.0%) 84 (65.6%) 31-50 years 13 (33.3%) 33 (25.8%) > 51 years 3 (7.7%) 11 (8.6%) Male 14 (35.9%) 54 (42.2%) Female 25 (64.1%) 74 (57.8%) 0.65 0.48 Area Beirut Other 27 (69.2%) 12 (30.8%) 94 (73.4%) 34 (26.6%) 0.61 Nationality Lebanese Other 36 (92.3%) 3 (7.7%) 115 (89.8%) 13 (10.2%) 0.65 Relationship Status Single Non Single 20 (51.3%) 19 (48.7%) 61 (47.7%) 67 (52.3%) 0.69 Children 0 Children At least 1 child 27 (69.2%) 12 (30.8%) 82 (64.1%) 46 (35.9%) 0.55 Religion Muslim Christian Druze or other 17 (43.6%) 20 (51.3%) 2 (5.1%) TABLE 1 - Association between the demographic variables and knowledge about organ donation. 58 (45.3%) 51 (39.8%) 19 (14.8%) 0.26 Knowing an organ donor or receiver did not present any particular trends as both those who were and those who were not acquainted with an organ donor or receiver showed very similar numbers (Table 2). When participants were asked whether they favored organ donation, 83.3% of the sample reported that they were with organ donation. The remaining 16.7% were either against, undecided or neutral in their position. Despite such positions, interestingly, only 3 individuals out of the 167 participants stated that they would not accept an organ from another person if they needed one, whereas 14 reported that they were undecided about the matter and finally the vast majority, being 150 responses, expressed a willingness to accept a donor organ when in need. When looking at religiosity scores of the sample, 22.8% did not consider themselves religious, 36.5% considered themselves moderately religious and 40.7% viewed themto be knowledgeable about the topic of organ donation while 25 were not. This discrepancy was even larger for individuals who were not familiar with such associations (out of 126 subjects 23 were knowledgeable while 103 were not). Similarly, among the only 3 healthcare professionals who answered correctly about the location of the first organ donation procedure in Lebanon, 2 were found to be knowledgeable about the topic and one was not while only 37 of those who did not answer correctly were shown to be knowledgeable in comparison with the 127 others who were not. Only half of the participants reported being acquainted with someone who has received or donated an organ. When asked to provide further information as to which organ could be donated, kidneys were reported to be the most commonly accepted organ with a 35.9% frequency of occurrence in the sample, followed by liver transplants (22%), cornea transplants (6.0%) and finally heart and lung transplants (4.2%). Variables No Know association No 16 (41%) 23 (59%) 25 (19.5%) 103 (80.5%).006 Know first donation No 2 (5.1%) 37 (94.9%) 1 (0.8%) 127 (99.2%) 0.07 Know donor/receiver No 19 (48.7%) 20 (51.3%) 64 (50%) 64 (50%) 0.89 TABLE 2 - Association between knowledge variables and actual knowledge about organ donation. 172 T. Ariss et al.

Variables No Position With Undecided or Neutral Against 35 (89.7%) 4 (10.2%) 105 (82%) 17 (13.3%) 6 (4.7%) 0.50 Reason N/A Religious reasons Worry about appearance Not enough information/own belief 38 (97.4%) 1 (2.6%) 114 (89.1%) 6 (4.7%) 2 (1.6%) 6 (4.7%) 0.54 Accept organ No/Undecided 36 (92.3%) 3 (7.7%) 114 (89.1%) 14 (10.9%) 0.56 Religiosity scale 1-3 4-7 8-10 11 (28.2%) 9 (23.1%) 19 (48.7%) 27 (21.1%) 52 (40.6%) 49 (38.3%) 0.14 TABLE 3 - Association between behavior variables and knowledge about organ donation. selves as religious. 19 out of the 68 who considered themselves religious were shown to be knowledgeable about organ transplantation while the other 49 were not. 9 out of the 61 respondents falling in the 4-7 range of the religiosity scale also seemed to be knowledgeable about the topic while the other 52 were not. Finally, 11 and 27 of those who considered themselves not religious were found to be respectively knowledgeable and non knowledgeable about organ transplantation (Table 3). In relation to the education level and/or career related variables, it was found that neither the role nor the department or the years of service had any significant effects on the degree of knowledge of healthcare professionals. In fact, none of the 8 fellows who responded to our email were knowledgeable about organ donation (Table 4). 10 out of 32 attending, 8 out of 33 residents, 7 out of 30 students and 14 out of 64 nurses only were knowledgeable about the topic. This did not differ whether these healthcare providers were in in-patient or out-patient departments (15 knowledgeable in in-patient departments and 19 in outpatient departments from a total of 140 individuals). The years of service at AUBMC also didn t have any statistical significance with the majority of the respondents falling in the 0-5 years at AUBMC range. 27 out of 108 professionals from that range were knowledgeable about organ donation while 81 were not. Similarly, 6 out of 32 healthcare providers having spent 6 to 10 years at AUBMC were knowledgeable about the topic in comparison with 26 who were not and 6 out of 26 individuals having spent more than 11 years of service at AUBMC were found knowledgeable in comparison with 20 who were not. Results from Table 1 showed that neither age nor gender had significant impacts on the degree of knowledge about organ donation. However, it is worth noting that the age range between 31 and 50 years seems more knowledgeable about the topic than younger and older counterparts Variables No Role Attending Fellow Resident Student Nurse 10 (25.6%) 8 (20.5%) 7 (17.9%) 14 (35.9%) 22 (17.2%) 8 (6.3%) 25 (19.5%) 23 (18.0%) 50 (39.1%) 0.46 Department In-patient Out-patient 15 (44.1%) 19 (55.9%) 38 (35.9%) 68 (64.2%) 0.39 Years at AUBMC 0-5 years 6-10 years > 11 years 27 (69.2%) 6 (15.4%) 6 (15.4%) 81 (63.8%) 26 (20.5%) 20 (15.7%) 0.76 TABLE 4 - Association between education and career variables and knowledge about organ donation., perception, and attitude of healthcare professionals towards organ donation in Lebanon 173

(33.3% knowledgeable in comparison with 59% and 7.7% respectively; and 25.8% not knowledgeable respectively contrasted with 65.6% and 8.6% for the 0-30 years and above 51 age ranges in that order). Being single or in a relationship and having a family with at least one child or not did not yield any significant results either. However, there were slightly more knowledgeable single individuals than non single ones (51.3% in comparison with 48.7%) and vaguely more knowledgeable respondents with no children than ones with one or more child (69.2% and 30.8% respectively). Religion was also not a significant predictor of the healthcare providers knowledge although there were marginally more knowledgeable Christians (51.3%) than knowledgeable Muslims (43.6%) or Druze and individuals with other faiths (5.1%). Discussion The survey questionnaires were sent to all healthcare workers via email. The expected 20% response rate was not reached. Instead only 11.3% filled out the questionnaire thus resulting in a smaller sample size where we were not able to determine significant relationships between the various variables when running a cross analysis. That being said, it is worth noting that the fact that being from the capital Beirut or other areas around the country, as well as being Lebanese or having a different nationality, did not make any statistically significant difference. This, in fact, is likely due to the very small sample of responses we received from non Beirut and non Lebanese healthcare providers. Nevertheless, and despite the fact that cross tabulations didn t render any significant results, our findings show that there are certain trends such as that for those familiar with organ donation associations to be more knowledgeable in that realm when compared with those who are not familiar with associations at all. Similarly, and despite lack of statistically significant results here again, there is an observable gap in the level of knowledge between respondents with different religiosity levels (with less knowledge being generally attributed to higher religiosity scores). This is likely due to the fact that religious people seem to be less open to the idea of organ donation in the first place and are in majority against it (considering that the number one reason for being against organ donation, as found in our results, is religious considerations). Interestingly however, the majority of those who are undecided about their position regarding organ donation, that is 17 out of the original 24, as well as all 6 of those completely against organ transplants have reported not being knowledgeable about the subject. Accordingly, reluctance to support organ donation seems to be attributed to the lack of information about the topic making it hard for individuals to make an informed decision. In fact, even among those claiming to favor organ donation, 105 out of 140 reported not being knowledgeable about the matter. Similar results were noted in the respondents readiness to accept an organ when in need: although many have voiced a readiness to accept an organ in such a case, most individuals did not seem to be particularly knowledgeable about the subject. In fact, 114 out of the original 150 accepting of a donated organ were not well informed about the topic. These results are consistent with the literature found in the Middle East and notably in Islamic countries (7, 8). In fact, similarly to the results Alsaied et al. (7) found in Qatar, most healthcare professionals seem to be supportive of the idea of organ donation but few have the ability to promote it to others due to the limited amount of information they have pertaining to the topic and its religious implications. Such a gap between attitude and knowledge (translating into a discrepancy between attitude and actual behavior as well) was also noted in Turkey, a relatively modern and westernized Islamic country (8). As noted by Demir et al. (8), in Lebanon, much like Turkey, religion seems to be a main factor affecting the acceptance of organ donation even among healthcare professionals themselves and accordingly playing a role in the way each professional approaches patients about the subject. It is however worth noting that unlike Qatar and Turkey, Lebanon is not an Islamic country though the majority of its population consists of Muslims. Nevertheless, as previously mentioned, our findings show differences in knowledge based on the degree of religiosity but no notable difference between different religions. It is hence important to emphasize the need to spread awareness regarding the topic of organ donation in Lebanon especially among healthcare workers. In order to maximize organ donation procedures, health care workers should become educated about transplant processes and possibilities. We suggest targeted awareness campaigns at medical and nursing schools as well as at hospitals throughout the country. In fact, similar suggestions have been proposed by previous studies especially because healthcare professionals are the ones to first accost the patients families (6). It is thus imperative to have a standard level of education about transplantation procedures that makes these professionals adequately qualified for responsibilities such as identifying possible donors and approaching them or their families (6). Nevertheless, education about organ donation and transplants should not be targeted at professionals in the field alone. It is important to educate university and perhaps school students as well about the topic in an attempt to raise more knowledgeable generations of not only healthcare providers but donors as well. These awareness and educational campaigns could additionally include sections that address the issue of organ donation from the point of view of each religion and possibly collaborate with religious figures willing to spread that kind of awareness. Finally and most 174 T. Ariss et al.

importantly, Lebanon needs official legislations regarding the matter of organ donation along with an organized and trustworthy system that includes a database of potential organ donors on one hand, and patients in need of organs on the other (5). Although associations promoting organ donation constantly work on keeping such a database, the responsibility needs to be shared with official governmental organizations and ministries. Author contributions Talia Ariss designed the questionnaire, sent out the questionnaire, analyzed the literature, participated in analyzing the results and drafted the introduction and methods sections of the manuscript. Sima Naamani participated in analyzing the data and the results and drafted the results and conclusion sections of the manuscript. Hani Tamim analyzed the data and ran the statistical analysis. Maria Karam conceived the study. Rana Sharara-Chami designed the questionnaire, participated in analyzing the data and revised the manuscript. The authors declare that they have no conflict of interest. References 1. Faraj W., Fakih H., Mukherji D., et al.: Organ Donation After Cardiac Death in the Middle East. Transplant Proc, 2010; 42:713-715. 2. Webster P.A., Markham L.R.: Pediatric organ donation: A national survey examining consent rates and characteristics of donor hospitals. Pediatr Crit Care Med, 2009; 10(4):500-504. 3. Mekahli D., Liutkus A., Fargue S., et al.: Survey of First-Year Medical Students to Assess Their and Attitudes Toward Organ Transplantation and Donation. Transplant Proc, 2009; 41(2):634-638. 4. Foley D.P., Fernandez L.A., Leverson G., et al.: Donation After Cardiac Death. Ann of Surg, 2005: 242(5):724-731. 5. NOOTDT. (2010). Organ donation. Retrieved from http://www. nootdt.org/index.php?option=com_content&view=category&layo ut=blog&id=7&itemid=2&lang=en. on July 3 rd 2014. 6. Schaeffner E., Windisch W., Freidel K., et al.: and attitude regarding organ donation among medical students and physicians. Transplant, 2004; 77(11):1714-1718. 7. Alsaied O., Bener A., Al-Mosalamani Y., et al.: and attitudes of health care professionals toward organ donation and transplantation. Saudi J of Kidney Dis and Transplant, 2012; 23(6):1304-1310. 8. Demir T., Selimen D., Yildirim M., et al.: and attitudes toward organ/tissue donation and transplantation among health care professionals working in organ transplantation or dialysis units. Transplant Proc, 2011; 43(5):1425-1428., perception, and attitude of healthcare professionals towards organ donation in Lebanon 175