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.
Strengths and limitations
Our study comes at a point in time when organ donation is an actively debated bioethical and medical issue in Pakistan. Therefore, our research is relevant and timely. Ever since the promulgation of the organ transplantation ordinance last year, the general population has started showing keener interest in the subject with a more receptive attitude towards discussing this issue as was seen by the encouraging response rate in our study. This will create a fertile ground for promoting awareness campaigns in the country.
Through our study and its results, we hope to be in a better position to clarify certain ethical issues regarding organ donation in Pakistan. The awareness regarding organ donation in the country can certainly be improved and this in turn can impact the motivation of the people towards organ donation. We state this because our study and previous studies done in other regions of the world have shown that awareness and motivation go hand in hand. Better awareness of organ donation and its various facets can be expected to improve the motivation to donate. Religion is one vehicle that can be used to motivate people towards organ donation. This survey showed the immense influence religion has in fashioning opinions towards organ donation.
We hope that people will translate these statistics into an aspiration to help others through organ donation. The extremely low level of organ donation seen in our survey should serve as an important revelation that despite the increasing prevalence of end-organ diseases in the country, not many organ donations are being carried out in a legitimate manner. We can also state that perhaps people are not as forthcoming about "backdoor" donations done for monetary gains for fear of being reported to authorities.
Even though 60% of the people interviewed in this survey were adequately knowledgeable about organ donation, the remaining 40% still need to be educated. Secondly, this only represents the knowledge level of an urban Pakistani; Karachi being a major cosmopolitan city and commercial hub of Pakistan. Therefore, its denizens can be expected to be better informed as compared to other areas in the country. The average inhabitant of the rural areas of Pakistan may not be quite as well informed about the growing issues of organ donation. The opinions of the people in this survey can help shape future policies regarding organ donation – their wishes, preferences and reservations can all be actively debated at higher forums before germane policies are engineered. This study can also help create more motivation amongst the people for organ donation; this being one of the major hurdles organ transplantation is facing today.
At the same time, we acknowledge the following limitations of our study. Firstly, we used convenience sampling to draw our sample. Convenience sampling is inferior to probability sampling in its representativeness of the population, and this limits the external validity of the study. Although all efforts were made to include subjects from various areas of the city, there is still a chance that this sampling method may have introduced bias. Some sections of the society may not have been "captured" in our survey, particularly socio-economically deprived areas where we expect to find greater gaps in knowledge and practices. Secondly, the information was acquired via a face-to-face interview which was based on a questionnaire. While this may have led to higher rates of completion of the forms because of interviewer's encouragement for optimum completion, it may also have introduced interviewer's bias in the process of data collection despite all efforts to minimize it. Another limitation was that computation of a knowledge score based on correct answers to a set of questions is somewhat arbitrary, does not incorporate differential weightage that may be placed on different questions and has not been validated. We also devised our own scoring system for categorizing people as belonging to lower, middle and higher socioeconomic classes based on a set of eight socioeconomic variables. Nevertheless, we feel that the scores provide a fairly plausible estimate of the degree of knowledge and the socio economic class of an individual.
Motives for donation may be different for brain dead and living donors. One limitation of our study is that these two types of donors were not differentiated in the questionnaire at a few places. Also, in item 19 of the questionnaire that addresses donation after death, we did not give the option of the deceased giving the consent during his lifetime for donation of organs after death. The results of the respondents to these questions should be interpreted with these limitations in mind.
Respondents reported the donation of blood along with donation of other solid organs with regards to the practices of organ donation. We would like to clarify here that although both are "donatable" tissues, the fundamental distinction between the two was very clear to the respondents as they mentioned to the interviewers during the interview process that blood donation was a "routine thing" for many of them while donation of solid organs like kidneys was not a common incidence. Our results regarding the practices of organ donation, where blood and solid organ donation are mentioned together, should be interpreted with this distinction in mind that the motives behind donating blood and donating a solid organ were different and this distinction was clear to the respondents that blood being a renewable tissue can be donated several times while donating a solid organ has a very permanent connotation attached to it.
We have used a quantitative tool to assess knowledge, attitudes and practices in our survey. This approach may pose some methodological problems in the procurement of all the necessary information for this study. Nevertheless, this study forms an important baseline document for future studies and a qualitative tool can be employed in further studies to gauge requisite information.