Public Knowledge and Attitudes Toward Organ Donation and Transplantation: A Cross-Cultural Study

Public Knowledge and Attitudes Toward Organ Donation and Transplantation: A Cross-Cultural Study

Public Knowledge and Attitudes Toward Organ Donation and Transplantation: A Cross-Cultural Study H. El-Shoubaki and A. Bener ABSTRACT Objective. The a...

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Public Knowledge and Attitudes Toward Organ Donation and Transplantation: A Cross-Cultural Study H. El-Shoubaki and A. Bener ABSTRACT Objective. The aim of this study was to determine the knowledge, attitudes, awareness, and determinants of organ donation and transplantation in a Qatari population. Design. This is a cross-sectional study to determine the knowledge and attitude toward organ donation in a Peninsula Arabian Gulf country. Setting. The setting was Primary Health Care (PHC) Centers and community-based study in Qatar. Subjects. A multistage sampling design was used in a representative sample of 1600 Qataris and non-Qataris, including males and females of at least 17 years of age, from October 2003 to May 2004. In this study a 1305 (81.5%) subjects participated, each giving consent for the study. Measurements. Participants completed a questionnaire assessing their knowledge, attitudes, and awareness for organ donation. Results. Of 1305 samples, 637 (48.8%) males and 668 females (51.2%) living in urban and semiurban areas agreed to participate and complete the questionnaire. Of these, 762 (58.4%) were Qataris. There was a significant difference between Qataris and non-Qataris with respect to their age, educational level, monthly income, and occupation. In this study, 31.6% of Qataris and 29.8% of non-Qataris had no idea about the organ donation; 37.8% of Qataris and 32.8% of non-Qataris were willing to donate their organs. The majority of subjects preferred donating organs to their close relatives and friends. However, 83.8% of the studied subjects did not agree with an incentive-based approach for donating organs. Conclusion. This study showed that people should not be blamed for not being willing to participate in organ donation, but the health system and health education providers are responsible. A more effective approach should be tried regarding health education.

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ESPITE improvements in graft and patient survival rates, the number of available cadaveric organs continues to lag far behind the need, waiting lists are still growing.1–3 The shortage of cadaveric organs for transplantation is a global problem.4 Some studies have suggested that knowledge, attitudes, and other determinants concerning this issue are influenced by many factors, including gender, educational level, occupation, sociodemographic status, income level, culture, and religion.2– 8 Although people generally express favorable views toward organ donation, few actually agree to donate before they die or agree to have the organs of family members donated upon their death.8 –11 Efforts to increase donation rates have included public

awareness and professional education programs, as well as law, that require physicians to request that families donate the organs of deceased or dying relatives.3– 8 Still, public From the Departments of Organ Transplant (H.E.-S.) and Medical Statistics and Epidemiology (A.B.)., Hamad General Hospital, Hamad Medical Corporation, Doha, State of Qatar. This work was supported and funded by the research Committee of Hamad Medical Corporation, Grant No. 239, Doha, State of Qatar. Address reprint requests to Prof. Abdulbari Bener, Advisor for WHO and Consultant and Head of Department of Medical Statistics and Epidemiology, Hamad General Hospital and Hamad Medical Corporation and University of Qatar, PO Box 3050, Doha, Qatar. E-mail: [email protected] or E-mail: [email protected]

© 2005 by Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710

0041-1345/05/$–see front matter doi:10.1016/j.transproceed.2005.03.014

Transplantation Proceedings, 37, 1993–1997 (2005)

1993

1994

health attitudes to cadaveric organ donation and transplantation are important major public health problems because prior consent of the donor or of a close relative at the time of death forms the basis for cadaveric organ donation in most developed and developing countries.1–13 The differences in prevalence, knowledge, attitudes, and factors influencing organ donation also depend on many potential barriers, which may reduce the organ shortage, although it is not clear which factors are most significantly related to decisions about donation. There has been no study of the knowledge and attitudes toward organ donation and transplantation in the Qatari population, but, there have been a few epidemiologic studies in the neighboring country of Saudi Arabia,13 66% of the studied population were found to be familiar with organ donation. The objective of our study was to discover whether organ donation and transplantation are recognized in the Qatari culture and to determine their attitudes toward organ donation, particularly as they correlate with sociodemographic status.

SUBJECTS AND METHODS This cross-sectional study based in the Primary Health Care (PHC) Centers of Qatar included a survey that was conducted among Qatari and non-Qatari populations of 17 to 65 years of age. The sample size was determined based upon a prior assumption that the awareness of organ donation in Qatar is similar to that in western countries1,2,4 and in Saudi Arabia.13 Our estimate of the true prevalence of awareness concerning organ donation in the general female population of the Qatar would be 66%, similar to that reported in developed and developing countries. Allowing an error of 2.5%, the computer program indicated that a sample size of 1600 subjects would be needed to achieve the objectives of our study, assuming the level of significance (type I error) of 5%, and a 95% confidence interval. A multistage stratified cluster sampling design was developed, using an administrative division of Qatar into 21 PHC Centers in terms of number of inhabitants, but, only 16 PHC Center were recruited for the study. These PHC Centers are visited mostly by 90% of the people, and the remaining 5 PHC Centers were excluded from our survey. Also, we selected 16 PHC Centers that represented geographically East, West, North, South, and Central locations of the Qatari population. The subjects were selected by simple random sampling among patients attending 16 PHC Centers for various medical conditions (9 urban and 7 semiurban). Qualified nurses and social workers were instructed to interview and complete a questionnaire for randomly selected Qatari and non-Qatari subjects of 17 to 65 years of age. Among 1600 subjects who were approached, 1305 (81.5%) expressed consent to participate in this study. One hundred fifty-eight males and 137 women were excluded from the study due to incomplete questionnaires, refusal to give their consent to participate, or failure to complete the questionnaire due to lack of time. The questionnaire and criteria for organ donation were defined and developed by the Investigator (A. Bener). A translated Arabic version of the Organ Donation and Transplantation questionnaire was revised by a bilingual physician in the Department of Organ Transplant (H. El-Shoubaki).

EL-SHOUBAKI AND BENER Table 1. Sociodemographic Distribution of Subjects by Nationality (N ⴝ 1305) Qatari (n ⫽ 763)

Non-Qatari (n ⫽ 543)

377 (49.5) 385 (50.5)

260 (47.9) 283 (52.1)

83 (10.9) 399 (52.4) 209 (27.4) 71 (9.3)

36 (6.6) 253 (46.6) 171 (31.5) 83 (15.3)

397 (52.1) 365 (47.9)

202 (37.2) 341 (62.8)

79 (10.4) 48 (6.3) 297 (39.0) 260 (34.1) 78 (10.2)

88 (16.2) 37 (6.8) 297 (54.7) 97 (17.9) 24 (4.4)

79 (10.4) 587 (77.0) 62 (8.1) 34 (4.5)

46 (8.5) 380 (70.0) 94 (17.3) 23 (4.2)

Variables

Frequency Gender Male Female Age group ⬍20 y 20–34 y 35–44 y ⱖ45 y Educational level Low education High education Monthly income of family No income ⬍QR1000 QR1000–QR5000 QR5000–QR10,000 ⬎QR10,000 Occupation Student Employee Manual laborer Retired/not working

P

NS

⬍.001

⬍.001

⬍.001

⬍.001

Abbreviations: NS, not significant. 1 US $ ⫽ 3.65 QR.

STATISTICAL ANALYSIS

The data were analyzed using the Statistical Packages for Social Sciences (SPSS).14 Student t test was used to ascertain the significance of differences between the mean values of 2 continuous variables; the Mann-Whitney test was used for nonparametric tests. Chi-square analysis was performed to test for differences in proportions of categorical variables between 2 or more groups. Multiple regression analysis (stepwise regression) was performed to assess associations between the independent and dependent variables. Also, a multiple regression analysis helped to identify the impact of each variable, while keeping the others at fixed levels and to adjust for potential confounders. It ordered the importance of risk factors (determinants) for organ donation. Spearman correlation coefficient was used to evaluate the strength of concordance between variables. The level P ⬍ .05 was considered as the cutoff value for significance.

RESULTS

A total of 1305 of 1600 enrolled subjects participated in the study, a response rate of 81.6%. No further data are available on the 158 males and 137 females who declined to be interviewed. Overall, 69.1% of the study sample were found to be aware and had ideas about organ donation and transplantation. Table 1 gives the sociodemographic characteristics of the study subjects. Both Qatari and non-Qatari women were of

CROSS-CULTURAL STUDY

1995

Table 2. Knowledge About Organ Donation Among Subjects by Nationality (N ⴝ 1305) Variables

Frequency Have you any idea about organ donation? Yes No Know different types of organ donation? Don’t know Know one or more Know most of them Know all of them Know requirements? Yes No If yes, which ones? Legal Medical Consent from the donor Psychological preparing of the donors All of the above Effect of organ donation on donor’s health? No effect Harmful effect Beneficial effect Harmful to donor, beneficial to recipient Don’t know Should we import organs from another country? Yes No Don’t know Reasons for importing organs? Don’t know More healthy organs Shortage of organs in country It is cheaper to buy from outside Reasons for not importing organs? Don’t know Not healthy organs Presence of organs in country It is cheaper to buy from outside Does organ donation affect the regular activities of the donor? Kidney Yes No Don’t know Bone marrow Yes No Don’t know

comparable age, income level, and educational background. There were significant differences between the groups with regard to age (P ⫽ .001), education (P ⫽ .001), monthly income (P ⫽ .001), and occupation (P ⫽ .001). Knowledge

Knowledge about organ donation among subjects by nationality a cross-cultural comparison is shown in Table 2. Estimates of knowledge of organ donation revealed 31.6%

Qatari (n ⫽ 762)

Non-Qatari (n ⫽ 543)

762

543

521 (58.4) 241 (31.6)

381 (70.2) 162 (29.8)

NS

241 (31.6) 278 (36.5) 174 (22.8) 69 (9.1)

162 (29.8) 182 (33.5) 134 (24.7) 65 (12.0)

NS

400 (52.5) 362 (47.5)

345 (63.5) 198 (36.5)

⬍.001

18 (4.5) 62 (15.5) 52 (13.0) 10 (2.5) 258 (64.5)

32 (9.3) 70 (20.3) 28 (8.1) 2 (0.6) 213 (61.7)

.002

196 (25.7) 55 (7.2) 33 (4.3) 175 (23.0) 303 (39.8)

155 (28.5) 44 (8.1) 16 (2.9) 139 (25.6) 189 (34.8)

259 (34.0) 495 (65.0) 8 (1.0)

157 (28.9) 366 (67.4) 20 (3.7)

46 (17.8) 19 (7.3) 175 (67.6) 19 (7.3)

14 (8.9) 9 (5.7) 120 (76.4) 14 (8.9)

NS

118 (23.8) 263 (53.1) 40 (8.1) 74 (14.9)

74 (20.2) 186 (50.8) 45 (12.3) 61 (16.7)

NS

234 (30.7) 297 (39.0) 231 (30.3)

164 (30.2) 239 (44.0) 140 (25.8)

NS

154 (20.2) 209 (27.4) 399 (52.4)

135 (24.9) 165 (30.4) 243 (44.8)

P

NS

⬍.001

.020

of Qataris and 29.8% of non-Qataris to have no idea about organ donation. Among the subjects, 15.5% of the Qataris and 20.3% of the non-Qataris knew that medical formalities are the main requirement for organ donation; 37.7% of the subjects were not aware of the effect of organ donation on the donor’s health and few believed that organ donation has a beneficial effect on the donor’s health (Qataris, 4.3% vs non-Qataris, 2.9%). Also, 65% of the Qataris and 67.4% of the non-Qataris did not agree with the idea of importing

1996

organs from an alien country, although they were aware of the shortage of organs in their country. Attitude

Table 3 presents the attitudes of subjects toward organ donation by nationality in a cross-cultural comparison. The attitudes of the study subjects were assessed by analyzing their responses. People had different attitudes about organ donation; 37.8% of Qataris and 32.8% of non-Qataris were willing to donate their organs. The majority of them were willing to donate after death (Qataris, 56.6% vs nonQataris, 58.4%). Furthermore, the majority of Qataris and non-Qataris believed that health education was the best method to increase the number of donors (81%). Table 4 shows the ideas and willingness of the subjects toward organ donation by nationality. The majority of the people preferred donating organs to their close relatives and friends rather than members of different cultures. Also, 83.8% of the studied subjects did not agree with organ donation for money. DISCUSSION

The chronic organ shortage is a world-wide problem that needs quick and vigorous intervention in organ collaboration centers.1–13 The organ shortage is attributed to a decrease in organ donors. Organ donation is a social necessity because transplantation is not possible without public collaboration. The National Kidney Foundation13 (NKF) in Saudi Arabia was established in 1986 for the purpose of coordinating cadaveric renal transplant programs among the hospitals and transplant centers in Saudi Arabia. As with the other organ procurement programs, the NKF educates the people of Saudi Arabia about transplantation and kidney disease. The results of the survey conducted by the NKF indicated that the literate and the younger populations were more aware of the NKF and its functions. A study conducted in Turkey1 on the public attitudes toward organ donation suggested that the main reasons for refusal to donate organs were insufficient knowledge about transplantation and incorrect information regarding the organ donation process. The results of this study indicated that religious people were sensitive about the subject of organ donation. Overall, 84% of the respondents said that organ donation was in accord with Islamic beliefs and 77% were in favor of the public becoming better informed about organ donation and transplantation. The lack of organ donation continues to be a major limiting factor in transplantation.15 Several attempts have already been made to develop strategies that increase organ donation. The Canadian Cystic Fibrosis Foundation suggested that 81% of Canadians say they are willing to donate organs. But only 65% of Canadians have ever discussed the idea of organ donation with a family member. The gap between the transplant patients on the waiting lists and the number of organs available is widening. According to the

EL-SHOUBAKI AND BENER Table 3. Attitude of Subjects Toward Organ Donation by Nationality (N ⴝ 1305) Variables

Are you willing to donate any of your organs? Yes No If yes, when? During life After death Both of them Why during life*? More humanity Cause no problem Others will be more happy Easier to him Why after death*? More humanity Cause no problem Others will be more happy Easier to him Organs you will donate during life? Kidney Bone marrow Organs you will donate after death? Kidney Bone marrow Heart Lungs Liver Cornea In your opinion, what causes people not to donate organs? Inadequate knowledge Afraid of operation Afraid of losing life Like to donate to close relative only All of the above Don’t know Methods to increase no. of donors*? Health education Privileges for donors Media (television/newspaper) Don’t know

Qatari (n ⫽ 762)

Non-Qatari (n ⫽ 543)

288 (37.8) 475 (62.3)

178 (32.8) 365 (67.2)

NS

30 (10.4) 163 (56.6) 95 (33.0)

24 (13.5) 104 (58.4) 50 (28.1)

NS

102 (35.4) 43 (14.9) 50 (17.4) 29 (10.1)

68 (38.2) 26 (14.6) 27 (15.2) 15 (8.4)

NS NS NS NS

129 (44.8) 124 (43.1) 86 (29.9) 151 (52.4)

75 (42.1) 76 (42.7) 53 (29.8) 79 (44.4)

NS NS NS NS

123 (42.7) 45 (15.6)

75 (42.1) 33 (18.5)

NS NS

185 (64.2) 161 (55.9) 200 (69.4) 177 (61.5) 180 (62.5) 179 (62.2)

116 (65.2) 86 (48.3) 103 (57.9) 96 (53.9) 98 (55.1) 108 (60.7)

.011 NS NS NS

126 (16.5) 132 (17.3) 97 (12.7)

82 (15.1) 94 (17.3) 49 (9.0)

76 (10.0) 259 (34.0) 72 (9.4)

73 (13.4) 195 (35.9) 50 (9.2)

NS

620 (81.4) 347 (45.5) 494 (64.8) 57 (7.5)

441 (81.2) 222 (40.9) 349 (64.3) 37 (6.8)

NS NS NS NS

P

*Multiple option percentages may not add to 100.

Urban Institute Futures Report, during the next 2 decades (2000 –2020), the number of organs donated for transplantation will increase by 12%, but the need will increase by 152%.16 Donating organs upon death can save lives, improve the quality of life for the sick, and give someone a chance at a healthy life. Hence, improving the awareness of the public at large to the importance of organ donation and transplan-

CROSS-CULTURAL STUDY

1997

Table 4. Ideas and Willingness of the Studied Subjects Toward Organ Donation by Nationality (N ⴝ 1305) Variables

Frequency Ideas about organ donation Frightening operation and very dangerous Worthwhile to do to save lives Against the humanity Forbidden by religion Willing to donate to parents? Yes No Willing to donate to sons and daughters? Yes No Willing to donate to brothers and sisters? Yes No Willing to donate to friends? Yes No Willing to donate to relatives? Yes No Willing to donate to foreigners? Yes No Organ donation for money? Strongly agree Agree Disagree Strongly disagree

Qatari (n ⫽ 762)

Non-Qatari (n ⫽ 543)

762

543

232 (30.4)

143 (26.3)

302 (39.6) 19 (2.5) 23 (3.0)

234 (43.1) 15 (2.8) 23 (4.2)

654 (85.8) 108 (14.2)

450 (82.9) 93 (17.1)

NS

549 (72.0) 213 (28.0)

402 (74.0) 141 (26.0)

NS

483 (63.4) 279 (36.6)

338 (62.2) 205 (37.8)

NS

236 (31.0) 526 (69.0)

144 (26.5) 399 (73.5)

NS

203 (26.6) 559 (73.4)

127 (23.4) 416 (76.6)

NS

114 (15.0) 648 (85.0)

73 (13.4) 470 (86.6)

NS

21 (2.8) 105 (13.8) 239 (31.4) 397 (52.1)

10 (1.8) 75 (13.8) 195 (35.9) 263 (48.4)

NS

P

NS

tation is essential. The purpose of this study was to investigate the public’s knowledge and attitudes toward organ donation and transplantation. The present study was a cross-sectional survey to examine people’s attitudes and level of knowledge toward organ donation. Although people have favorable views toward organ donation, they find it difficult to donate before they die. This cross-cultural survey identified that both Qataris and non-Qataris were willing to donate their organs, which constituted 35.7%, a result that was quite unexpected. In Qatar, the most common reasons for not being willing to donate organs were fear of operations (17.3%), inadequate knowledge (15.9%), and fear of losing life (11.2%). Also, 69.1% of the studied subjects had an idea about organ donation among whom 57.8% were Qataris. The survey revealed that people need more of a push for

organ donation. Offering rewards or incentives for donation is an approach to encourage people. The idea behind an incentive-based approach is not so much to compensate people for their organs, but to push them to make a decision. The results of this survey indicated that the majority of subjects did not agree with an incentive-based approach to organ donation (83.8%), which may be due to their sensitivity to religion or to their humanitarian consideration toward the victims. Nevertheless, a follow-up study is important to design future strategies that will largely depend on the people as the only source of organs for the future success of transplantation programs. This study can also help in directing our strategy in health education. In conclusion, this study showed that people should not be blamed because of unwillingness to participate in organ donation, but the health system and health education providers are to be blamed. A more effective approach should be initiated regarding health education. REFERENCES 1. Kececioglu N, Tuncer M, Yucetin L, et al: Attitudes of religious people in Turkey regarding organ donation and transplantation. Transplant Proc 32:629, 2000 2. Light JA, Kowalski WO, Ritchie WO: New profile of cadaveric donors: what are the kidney donor limits. Transplantation 28:16, 1996 3. Shaheen FAM, Souqiyyeh MZ: Factors influencing organ donation and transplantation in the Middle East. Transplant Proc 32:645, 2000 4. Evans RW, Orions CE, Ascher NL: A potential supply for organ donors. An assessment of the efficacy of organ procurement efforts in United States. JAMA 267:239, 1992 5. Daniels DE, Smith K, Parks T, et al: Organ and tissue donation: are minorities willing to donate. Ann Transplant 3:22, 1998 6. Shafer TJ, Durand R, Hueneke MJ, et al: J Transpl Coord 8:146, 1998 7. Guttmann A, Guttmann RD: J Med Ethics 19:148, 1993 8. Jasper JD, Nickerson CAE, Hershey JC, et al: The public’s attitude toward incentives for organ donation. Transplant Proc 31:2181, 1999 9. Manninen DL, Evans RW: JAMA 25:3111, 1985 10. Overcast TD, Evans RW, Bowen LE: JAMA 25:1559, 1984 11. Dominguez JM, Gonzalez ZA, Morales LA, et al: Transplant Proc 23:1804, 1991 12. Kowalski WO, Light JA, Ritchie WO, et al: A new approach for increasing the organ supply. Clin Transplant 10: 653, 1996 13. Aswad S, Souqiyyeh MZ, Huraib S, et al: Public attitudes toward organ donation in Saudi Arabia. Transplant Proc 24:2056, 1992 14. Norusis MJ: SPSS/PC⫹ for Windows: base system and advanced statistics user’s guide. Release Version 11. Chicago: SPSS Inc; 1998 15. Lavern E: HHS launches bid for organ donations. Mod Health Care 21: 2001 16. Lifeline of Ohio: Statistics. Available at: http//www.lifeline of ohio/org/media/story.com. Accessed May 20, 2004.