Knowledge, attitudes and practices survey on organ donation among a selected adult population of Pakistan

Organ transplantation saves thousands of lives worldwide. According to WHO, kidney transplants are carried out in 91 countries. Around 66,000 kidney donations, 21,000 liver donations and 6000 heart donations were transplanted globally in 2005 [1]. Organs for donation are procured from both living donors as well as cadavers. In South-East Asia, and Pakistan, however, almost all organ donations come from living donors [2].

Pakistan is a developing Muslim country of more than 160 million people [3]. According to the estimates of a prominent kidney transplants centre of Pakistan, Sindh Institute of Urology and Transplantation (SIUT), approximately 15,000 patients in Pakistan suffer from kidney failure every year. The only treatment options available for these patients are either dialysis or kidney transplantation [4]. As of 2007, there are 12 transplantation centers in Pakistan with five being in the public sector and seven in the private sector. Approximately 400 renal transplants are done every year despite the increasing number of patients with end stage renal disease (ESRD); the donors being living. According to available statistics, only seven cadaveric kidneys from abroad have been harvested for transplantation so far and only one from a local cadaver [2].

It is s dismal fact that there is no liver transplantation centre in the country [5] despite the high estimated prevalence of Hepatitis B and Hepatitis C in our population; being 3–4% and 6% respectively [6, 7]. Data about the transplantation of other organs in Pakistan are unfortunately not available. An absence of an organized and well established national registry is a major hurdle in this regard.

Organ transplantation has recently drawn attention as a bioethical issue for robust debate in Pakistan. Emerging concerns intertwined with it include the burgeoning trend of transplantation, lack of legislation to govern it and exploitation of human rights. These efforts led to the promulgation of an Ordinance in 2007 to regulate the transplantation of human organs and tissues [8–10]. This ordinance mentions living donors of at least eighteen years of age. Any close relative can be a donor according to it but must donate voluntarily and without duress or coercion. This law also allows that cadavers can be used as a source of transferable organs in Pakistan [2]. In this Ordinance, "brain dead" means "irreversible loss of brain and brain stem functions simultaneously" while a person will be deemed to be medically and legally dead when there is "an absence of natural respiratory and cardiac functions and attempt at resuscitation are not successful in restoring those functions; or an irreversible and permanent cessation of all brain-stem functions and future attempt of resuscitation or continued supportive maintenance would not be successful in restoring such natural functions" [11]. This Ordinance also makes provisions for the establishment of a regulatory Monitoring Authority for organ transplantation in the country [11]. However, this Ordinance has not yet addressed the establishment or the development of an organ distribution system like UNOS in USA.

The law is important to protect the impoverished sections of the society from exploitation. A survey of kidney vendors done in Punjab, Pakistan showed that 34% were living below the poverty line. Most of these kidney vendors were illiterate; 69% were bonded laborers. Their monthly income was US$ 15.4 ± 8.9. Ninety three percent of these individuals had vended their kidneys for the purpose of debt repayment [12]. Another study reported the various aspects of 104 kidney vendors in Pakistan; 67% were bonded laborers earning < $ 50 per month. Hepatitis B and C positivity was seen in 5.7% and 27% respectively [13]. According to estimates, paid donation makes up 50% of all transplants in Pakistan [14]. Wider public awareness of this Ordinance is important for its reinforcement and implementation. Organ trade is an important emerging issue that should be tackled with appropriate legislation. According to World Health Organization (WHO), organ trafficking may be accounting for up to 5–10% of the kidney transplants performed annually [15].

Overall, globally the prevalence of knowledge for organ donation ranges from 60% to 85% using different knowledge variables [16]. This trend has been reported to vary with the development status of the country. Motivation to donate has been shown to have an association with knowledge and awareness of organ donation [16]. Most of the research evidence on this subject is from the more developed countries. In a study from USA that included 278 respondents, 69.1% knew that blood-type made a difference in donation (p = 0.000), 61.6% knew that transplant survival rates were high (p = 0.000), and 75.9% knew that transplants could come from living donors (p = 0.000) [17]. Another study done in European Union determined that more educated, younger age, and expressing some sort of political affiliation determined willingness to donate one's own organs and consent to the donation of those of a relative [18]. From the developing world, a study conducted in Filipinos using qualitative theme analysis identified major themes related to organ donation as: awareness of organ donation, family beliefs, religion/spirituality, attitude/emotions, personal experience with organ donation, health profession, and cultural issues [19].

There is dearth of information on this subject in Pakistan. Only one study [16] was conducted to gain insight into KAP regarding organ donation among the patients coming to the outpatient units of a tertiary care hospital in Karachi. However, this study focused on the outpatient population coming to clinics and not the general population. This study reported that 59.9% of the people surveyed were willing to donate their organs.

Therefore, the aim of our study was to fill the gaps regarding public awareness of organ donation in Pakistan. Also, we wished to determine factors that motivate or dissuade Pakistani individuals from organ donation. This information would be helpful for tailoring more precisely targeted programs and campaigns in the future.

Participants who hadn't heard of the term "Organ Donation" were not asked to answer other questions of the Organ Donation section. They were included among respondents who were not adequately knowledgeable about organ donation.

Eighty one (50.1%) people knew that organs for donation can come from cadavers while 36.5% knew that organs for donation can come from living persons. However, only 23% of the people knew that organs for donation can come from both living persons as well as cadavers. Our study showed that 66.2% people knew that kidneys can be donated, followed by 51.5% who knew that blood can be donated and 46.4% who knew eyes can be donated. Only 26.2% of the people knew that kidneys, blood, heart, eyes, liver, skin, bone marrow and lungs can all be donated.

In response to the query, "who would you like to donate your organs to?", people reported that they would donate their organs to a family member (51.1%), non-smoker (46.8%), non-drinker (55%), younger age person (less than 30 years old, 40.2%), person belonging to their own religion (32.1%) and a person who is mentally sound (43.9%) and without any physical disabilities (36.8%). With regards to knowledge regarding the various risks associated with organ donation, 55.8% people were aware that organ donation is associated with some risk for the donor. However, 28.7% said that organ donation involves no risks. Among the risks, bodily weakness (34.1%) and infection (22.3%) were the two leading causes chosen by the respondents to be associated with organ donation as shown in figure 1. About 25% knew that organ donation could be associated with all of bodily weakness, infection, bleeding, pain, anxiety and depression.

The responses of the respondents with regards to the reasons underlying organ donation are illustrated in figure 2. Almost 60% believed that the basic aim of organ donation is to save someone's life. Some people responded that organ donation can be done out of compassion/sympathy while others cited monetary benefits as the leading motivation behind organ donation. Still some others though that organs are donated as a responsibility.

With regards to the role of the doctor in the process of organ donation process, about 54% of the respondents felt that the doctor should adequately educate the donor as well as the recipients of the risks involved in organ transplantation and then let them make the decision themselves.

With regards to motivation to donate, 120 (37.7%) people said that they would never like to donate any organ while 198 (62.3%) people were motivated to donate. Of the 198 people who were willing to donate, 70 (35.3%) were highly motivated, 36 (18.2%) were moderately motivated and 92 (46.5%) were weakly motivated to donate. Religion, gender, age and marital status didn't have a significant association with the motivation to donate. However, SES was found to have a statistically significant association with the motivation to donate (p = 0.004). Similarly, knowledge scores for organ donation were significantly associated with the motivation to donate an organ (p = 0.002). In addition, the perception about the allowance of organ donation in religion was also significantly associated with the motivation to donate (p = 0.000).

With regards to consent, 76% respondents thought that the donor should be the one who can give consent for a living donation. Thirteen percent respondents thought that the family should give this consent while 5% opined that spouse should give this consent. Three percent of the respondents each thought that friends and doctor should be the one giving the consent.

For donation after death, 52.8% of the people thought that family should have the right to make decision for organ donation while 26.1% people believe that no one has the right to make this decision; only 6% felt that the doctor should be the one deciding this. In the case of unclaimed bodies, a majority (35.2%) felt that the charitable organizations should have the right to decide on this issue while 22.3% felt that no one has the right to make such decisions. Unclaimed bodies were not taken to mean bodies in morgues or bodies found dead on the street (which are not candidates for harvesting organs); rather they were "the case of a dead body lying in a hospital or prison and not claimed by any of the near relatives of the deceased person within forty eight hours from the time of death of the concerned person" [21].

We aimed to compare the knowledge, attitudes and practices regarding organ donation in a selected adult population of Karachi, Pakistan. Our analysis of the collected data revealed an interesting set of findings.

Our study showed a slightly lower prevalence of adequate knowledge (60%) regarding organ donation when compared to 65.5% reported by an earlier study in Pakistan [16]. This difference can be explained on the basis of two reasons. Firstly, this could be because of the difference in the study population; ours being the non-patient population encountered in the market places of Karachi while the previous survey was done on the patient population coming to a private tertiary care hospital. Secondly, different knowledge variables have been used in our study as compared to the previous study for the assessment of knowledge status of respondents with regards to organ donation. The associations obtained for organ donation with education and socioeconomic status were also consistent with the previous study. A study done in Lagos, Nigeria also reported that 60% respondents were aware of organ donation in general [22].

Only a minority of the respondents were aware that organs for donation can come from both living persons as well as cadavers. This is significantly different from the previous study [16] where up to 84% people knew that organs could come from cadavers and 71.1% thought that organ donation could be carried out during one's lifetime. This difference can be explained by the reasoning that the patient population in the previous Pakistani study is expected to know more about organ donation. This awareness could possibly have arisen from discourses with doctors or nurses or even fellow patients at the hospital on the subject of organ donation and possible donors. Pamphlets encountered at medical centers could have also enhanced the knowledge of the respondents of the previous study regarding organ donation. Personal experience with organ donation after the death of a family member could also aggrandize the level of awareness of the respondents in the previous study. Out respondents in contrast were encountered on the street and while we didn't enquire about the frequency of their hospital visits, we expect their level of understanding of the process of organ donation to not be equally par with their counterparts who were encountered at the hospital in the previous survey.

In our study, 62% individuals were willing to donate an organ. Fifty one percent respondents mentioned that they would like to donate their organs to family members. These percentages are comparable to data obtained in studies from neighboring countries like China. In a study done in China, 49.8% respondents indicated they would be willing to be living organ donors. Sixty two percent individuals designated relatives as their most probable recipients [23]. A study from Qatar reported that the majority of subjects preferred donating organs to their close relatives and friends [24]. For the results in our survey, we can explain this finding on the basis that in Pakistan, joint family system is generally prevalent with most people living in a closely knit system. Donation of the organ to a family member might be viewed as an "imperative" obligation or it might stem from a feeling of love and compassion for the family member. Moreover, this donation could be done simply because a person has faith and confidence that the organ is being given to a deserving recipient whom he has spent time with and has actually seen suffering from the effects of end organ disease. The person could have deterrence towards donating an organ to a stranger because of the lack of certitude or guarantee that the organ will actually go to the most deserving person. Being biased in donating towards family can therefore be viewed as a natural response of man – a social animal – who functions in a society where the basic unit of architecture and the basic building brick is in fact family.

Our study findings are different from data from other developing countries like Nigeria where only 30% of the respondents expressed a willingness to donate in one survey [22]. In a study from Ohio, over 96% of respondents expressed favorable attitudes toward donation [25].

In contrast to the previous Pakistani study [16] which showed a significant association of the willingness to donate with gender; our results didn't demonstrate any association with gender, age or marital status. A study from Nigeria showed that the willingness to donate an organ was significantly associated with younger age (P = 0.002), but not with gender (P = 0.47) [22].

SES and knowledge score for organ donation was found to be associated with motivation to donate. The perception about the allowance of organ donation in religion was significantly associated with the motivation to donate (p = 0.000). People who believed that religion doesn't allow organ donation showed no motivation to donate in the future. Comparison with the previous study also revealed that the most prevalent reason behind the refusal to donate was a "presumed forbiddance in religion". This could be because of the unawareness of the population regarding religious edicts regarding organ donation. A number of Islamic organizations and institution around the globe have issued fatwas and edicts in favor of organ donation; describing it as "an act of merit" [16, 26, 27].

Fifty seven percent of respondents were in favor of organ donation and its promotion in the future. This is lower when compared to data from a study done in Brazil which reported that 87% of respondents were in favor of organ donation [28]. We can explain this difference on the basis of the reservation some people might have in view of the recent mushrooming growth of organ trade and trafficking in the country. The negativity projected by the image of organ trade can have a detrimental effect even on the organ donation for altruistic purposes because it weakens the fiber of confidence of the people in the transparency and authenticity of the process.

We asked the respondents why they thought organ donation is done. Apart from answering about saving another human's life, some replied that it is done as a responsibility, others though that it is done for monetary gain while others still thought that it is done out of compassion and sympathy. In principle organ donation driven by altruistic purposes is certainly different from vending a kidney from poverty; it is exactly the kind of understanding we were hoping to gauge through this question. Respondents chose different reasons for organ donation; each individual chose an option nearest to his understanding for the reasons that drive organ donation. Monetary gains were juxtaposed with altruism by respondents. This may also highlight the blurring of perceptual boundaries due to the rampant organ trade in the country; hence the need to improve awareness of organ donation for altruistic purposes in the country can't be over emphasized.

It is a disappointing trend to note that only 23.3% people had heard about organ donation, through a doctor. Comparing our results with the previous study done in Pakistan [16], it is clear that television, print media and doctors fall in the same order of frequency with regards to being sources of information for organ donation. Efforts to judiciously increase the participation of doctors in the process should start at the root level. As a first step, the medical curriculum should increase medical students' awareness of the organ shortage problem and how it can be effectively addressed [29]. A study done in California revealed that speaking to a physician about organ donation positively influenced the likelihood to donate an organ [30]. Although we have no study from Pakistan that assesses the knowledge and attitudes of physicians regarding organ donation, studies from other regions show that over 95% of the physicians who responded to a questionnaire based survey supported organ donation in principle. Physicians responded correctly on average to 68.3 per cent of the questions testing knowledge [31].

It was heartening to see that in our study 88.1% of the people expressed the need for effective legislation to govern organ donation practices. Effective legislation is indeed important to regulate the future practices related to organ transplantation in the country; the lack of which has allowed organ trade to spawn in recent years. An extremely small proportion had actually ever donated a solid organ.

We found that awareness of organ donation is correlated with education and socioeconomic status. Motivation to donate in turn is associated with the awareness of organ donation. Religious beliefs are a major factor deterring many people from expressing a motivation to donate.

Measures should be taken to educate people with relevant information, including the benefits of organ donation and possible risks as well so that people can make informed choices in the future. In the absence of adequate baseline information, it is indeed difficult to comment on whether the general population is already aware of this simple facet. Almost 30% of the people were not aware that organ donation carries any risks. People have a right over their body; they should therefore be fully educated about the future repercussions removing any part of their bodies can have on their health. With full disclosure of such information, they can then make the choice of donating an organ to another human being in the noblest spirit of munificence and benevolence.

Television, newspapers and doctors can be used as efficient sources of information. The communication gap between patients and doctors should be bridged for the generation of a more favorable attitude towards organ donation in the population. Policy makers should also involve religious scholars for the mobilization of a favorable public opinion towards organ donation. In addition, a publicly chartered organization may be established to coordinate live organ donation, including donation by altruistic strangers.

The authors declare that they have no competing interests.