By Ken Ananta Huang
Abstract:
The organ waitlist system plays a crucial role in determining order of allocation in transplants among different groups of patients. However, the public’s opinions and attitudes question its fairness, transparency, and consistency which the system has been framed for abusing its distribution. This study investigates the different opinions and perspectives coming from different types of participants: transplant patients, donors, and non-donors. Through inquiries and a digital survey, we can analyze perceptions of equity, if microtrends can be recorded in socioeconomic status, religion, or other factors that may affect the decision-making process in the waitlist system. The findings summarize and emphasize disparities in the transparency of the system, with honest and consented opinions through a viable secure platform for people to share. These point of views is relevant towards building trust and communication to not only encourage more people to expand the donor pool, to not only oversee the level of knowledge majority of people are in, but for addressing misconceptions and clarifications inside a community which may potentially break inequalities of allocating life-saving transplants for all patients in need.
Introduction:
Research problem
The global issue on organ shortage poses a significant challenge within the medical community, as there is a scarcity on the number of willing donors giving full consent, acknowledging personal implications to themselves. Even with the active measures in spreading awareness regarding the issue, many patients and other bystanders continue to express their criticisms which rely on their personalized experiences, thoughts, opinions, and possible factors that influenced their current conception.
Rationale
The demand of organs will continuously rise annually due to its proven and most effective success rates in treating organ failure in patients. Over 100,000 patients with different backgrounds and unique specialities are waiting everyday with hospitals acknowledging that the shortage in supply and the specific type of organs they need is influencing allocation techniques. This research firstly aims to identify the different allocation methods and factors that must be considered in an economic and ethical perspective, such as medical urgency, utility, compatibility etc. Furthermore, the gist of this study and its main mission is to compare and contrast attitudes or opinions within certain groups of individuals: waitlisted transplant patients, living donors, non donors. Patients often undergo or experience anxiety or negative emotions due to the time-delay, causing worriedness in their families or potentially mental health. Moreover, due to the constant questions by the general public, families of patients, clarifications need to be addressed in order to provide perceptions of trust and participation in the donation process; it simultaneously enhances their awareness towards this contentious issue.
Aim of the study
This study aims to investigate different perspectives or viewpoints in different types of individuals. Furthermore, it is also used to compare their standpoints and understanding regarding the waitlist, with common problems arising such as misperception or misconceptions. Aside from that, this study also aims to acknowledge current priorities in the waitlist, highlight potential problems afflicting with the upcoming results, and to identify whether it is really people’s misconception that is affecting donor pools and evaluation, or is it the transplant system’s lack of transparency.
Hypothesis:
This study hypothesizes that due to the extremity of long waitlist time with countless patients yet to be treated, people’s attitude may differ between different age groups. For example, young people or people within ages 20-30 would receive priority in the waitlist, as they would have a higher expected survival rate. This is due to the fact that they can have more productivity in the job sectors with the received organs, causing their opinions to go against opinions of middle aged to elderlies. However, there may be different cases from each region, with hospitals prioritizing and shifting their focus towards the severity, medical urgency, tissue compatibility etc.
Research Background
Kidney failure is the cause of 1.2 million deaths each year. In 2022 alone, there were roughly 157,000 organ transplants performed globally, but compared to the demand of organs and the number of people who are waiting for their life to be saved from one organ transplant, the difference in ratio is extremely high and is likely to increase. Lack of access and equity to organ transplantation affects most countries in the world, but is worse in developing countries such as Myanmar, Philippines, and other Southeast Asian countries which have some of the lowest rates of actual deceased donors. However, even developed nations like the USA and Germany and Norway face shortages. Policies such as the opt in and opt out system, priority incentives for donors etc. have been implemented with varying effectiveness. Every country has a different method in managing the order of transplants, using waitlists to accordingly arrange patients on who should be prioritized first. However, this brings forth the issue of bioethics especially when millions of patients die annually while waiting in the transplant waitlist, yet to be issued.
Multiple solutions have been proposed to combat this issue, such as bioengineered organs –creating new tissues using an existing scaffold to act as the same function– or even to the extent of xenotransplantation –transfer of living cells from animals to humans–. However, it is evident that these methods are within development, where it hasn’t been made to suit an effective yet abundant cure to this issue. Furthermore, it endangers the patients health as it is a current prototype that is still undergoing tests; the risks of human lives are far too dangerous.
Contributing to the scarcity of available organs, a report from the National Academies of Sciences, Engineering, and Medicine finds that 1 out of 5 or 20% of kidneys from deceased donors are not used within the U.S. The same report also states that the organ transplant system is demonstrably inequitable, with lack of coordination across different parts of the system. Moreover, in countries like the U.S there is a significant issue regarding race and peoples disabilities in the clinical equations used in allocating organs. With all these seemingly harmful aspects within the waitlist, they all share a common goal which is to save as many lives as they possibly can; patients and civilians must have a right overview regarding this issue as they are sovereign. Hence, factually-based information must be spreaded throughout all communities for an accountable performance, making them better equipped to save more lives in the most equitable way.
Compilation of Sources
Although this topic has already been covered, ranging from benefits and drawbacks of the organ waitlist system, all the way to country implementations to combat high death rates within the waitlist. However, the goal of determining why donated organs ultimately fail to succumb to the high demand is still a present and pressing issue. Hence, surveys or primary sources may aid in achieving and revealing potential influences that control an individual's thought process; implications of this survey can alter and prove benefit towards existing research.
Methodology:
Study design: This study employed a qualitative cross-sectional design to investigate the attitudes towards organ waitlist systems among waitlisted transplant patients, donors, and non-donors. The primary focus was to firstly assess their socioeconomic status and their background, either regarding their age, education, religion etc. Furthermore, another focus is to identify their standpoint regarding the allocation system within the waitlist. This included how long they were present in the waitlist, what type of transplant do they need, etc.
A survey-based approach was chosen to gather information on opinions and attitudes of different individuals, then the results to the questionnaire were stratified by age groups, socioeconomic status, education level, etc. This was in order to enable comparative analysis.
Participants:
Participants were recruited using a combination of convenience and purposive sampling techniques, based on their own knowledge and personal understanding. Some participants are also recruited through their medical background. Furthermore, the sample was stratified out into the following age groups:
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20-24
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25-34
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35-44
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44-60
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60 years+
Gender Distribution
In order to find possible gender-based differences in the attitudes towards the organ waitlist system,
The gender distribution was analyzed to examine whether or males and females have a differing opinion
Instruments:
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Survey
This survey was made to get information about the participant’s attitudes towards the allocation process, including:
Data collection:
Data collection occurred in one phase, both put into one questionnaire in order to study the attitudes and perspectives of 150 individuals whether in the waitlist system or not. The correlation may differ and be separated into multiple factors such as age group, religion, education etc. The survey was administered online via a secure platform (Google Forms), sent to multiple age groups with different backgrounds and socioeconomic status to ensure accessibility, convenience, and a wider-view of perceptions in terms of equitability, fairness, and distribution techniques.
Population and Study Setting:
This cross-sectional, single center study enrolled some patients active on the transplant waitlist at an academic, tertiary care hospital, but mostly their relatives and friends. The ___ patients active on and off the waitlist at the time of survey distribution shared either their own family members or colleagues are experiencing the same situation, or most shared their honesty and their relevance towards the conflict. Moreover, the majority of participants are in an educational setting to make their own judgement.
Methods:
This investigation dives deep into how certain individuals observe the waitlist, correlating to the overall topic with questions based on their current knowledge. This survey expands not only within students and teenagers, but also towards elderly patients who are statistically more prone to chronic illnesses. Forms to observe microtrends, relationships, differences and similarities between each user's responses shows to be an effective, acceptable, and mobile research method, especially to compare personal insights which will convert into an oversight. More importantly, I ensured that participants answer using their own will and consent, expanding options to prevent informative decision-making and panic decision-making due to the high ethical standpoints.
The first part of the survey is an ‘introductory’ section, where users are asked about their background and status. It is extremely important that all participants and individuals must be informed of an anonymous response beforehand, to maximize integrity in these submissions; users will feel comfortable when asking these questions.
Collected information and style of questions include demographics, knowledge, and potentially barriers regarding organ donation. Non-donor participants were assessed on section 3 of the survey, with questions such as:
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“How familiar are you with the process of organ allocation?”
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Very familiar
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Somewhat familiar
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Not very familiar
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Not familiar at all
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“Race/ethnicity affects the allocation process”
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Strongly disagree
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Disagree
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Neutral
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Agree
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Strongly agree
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“I feel that organs should go to the sickest patient first”
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Strongly disagree
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Disagree
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Neutral
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Agree
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Strongly agree
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“I am concerned that my organs might go to someone who does not deserve them”
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Strongly disagree
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Disagree
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Neutral
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Agree
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Strongly agree
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“Wealth/social status affects prioritization in the waitlist”
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Strongly disagree
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Disagree
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Neutral
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Agree
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Strongly agree
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“Should children be prioritized over adults”
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Yes, because they have a longer life expectancy
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No, because medical urgency should be prioritized first
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Depends on the situation
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Not sure
These sets of questions focus on the basis of understanding and what respondents believe to be true, and ethical for the allocation system. Most non-demographical data (including knowledge and attitudes) were assessed using a 5 point Likert Scale, where 1 = Strongly disagree, 2 = Disagree, 3 = Neutral, 4 = Agree, 5 = Strongly agree. However, not all of these questions follow the Likert Scale to improve and range answers further towards their thought processes by using frequently-answered options that are inferred beforehand. Data recorded is contained in a server in an identified manner (Excel sheets); the survey was handed out for 2 weeks towards different communities.
Additionally, demographic data was added on the first section of the survey, in order to investigate which type of participants are actively filling the form up; whether there may be some correlation between both demographic and opinion-based responses such as but not limited to: age, gender, religion. These assessments may include questions such as “Which age group do you belong to?” which gives options from under 20 years old to above 60. Another question may also include gender, race, religion, education, and marital status. For example, “What gender do you identify as?” This provides freedom of response for participants, creating a suitable environment that may transition into deeper and heavier questions. In order to create a comprehensive background for analysis, questions like “Do you know someone who is on the organ waitlist” or “Do you know someone who is/was an organ donor” were included for respondents to adapt; it presents a survey signifying each of their responses with no compensation needed.
A section was then added for patients who require a transplant. Questions to understand what influences their perception of the waitlist system must be included in the survey, not limited to time on the organ waitlist and what type of organ transplant they need (kidneys, heart, etc). These factors may potentially influence the rate of allocation. For example, the kidneys is an organ which filters blood and waste products out of the body. If one kidney fails or undergoes kidney failure, the standard of living may fall as dialysis is needed to mechanically filter waste that builds up in the bloodstream (Debra Stang, 2018). However, once a kidney is donated the donator may survive with only one kidney, which could potentially increase the supply of available kidneys for transplantation. Proven by the European Commision of Public Health, Kidneys are the most frequently transplanted organ and help patients with end-stage kidney disease. Other frequently transplanted organs include livers, lungs and hearts, while the small bowel and the pancreas can also be transplanted, but kidneys are one of the rare organs that living donors are able to donate. Hence, this study may potentially uncover more about this conscientious issue.
Finally, the last section are assessments for each individual's perceptions on fairness in the organ distribution system. It may vary depending on their experience, knowledge, or other people’s past backgrounds, strongly supporting the research question for this case study. These questions include: “How transparent is the waitlist process?”, which implies if firstly this topic has been commonly discussed socially, or secondly if the news of organ waitlist has been broadcasted. “Do you think the current waitlist is fair?”, which directly asks them the main question and whether they have the understanding to answer the question. “What do you think determines a person’s position on the organ waitlist?”. Participants are given 5 options which are proven to possibly influence the distribution system and priority list. Medical urgency, time on the waitlist, age, social status, greater predicted survival.
In addition, the majority of these inquiries encourages participants to rethink their answers, asking them about factors that may make them more confident in the waitlist system; asking specific questions such as if organ donors may affect them to be prioritized first if they ever need an organ, or whether everyone should be treated equally. The last inquiry is open-ended which provides a more ‘free’ set of responses, where participants are given the choice to express their deep thoughts without any consequences and with a concealed identity.
Results & Analysis
Out of the 150 participants that were digitally sent the survey, 129 people responded (86%) with each of them having different backgrounds and demographics. In order to properly analyze the demographic results whether it may affect the distribution in organs, it is necessary to divide 3 separate types of participants – donors, non-donors, and waitlist patients. This data was recorded on a numerical table.
Table 1: Non-donors
Demographic Results
Out of 129 participants who gave consent and filled in the form, 121 were non-donors and not part of the waitlist which is roughly 93.8%. Majority are 44-60 years old (46.2%), 61.2% are female, almost if not all were from south-east asia or China, with a proper education and diverse status. These factors hold crucial information in determining their point of view, such as their religion, education, or other circumstances. Based on the table, 22.7% did not attend college, 30.5% are Christian faith etc. However, aspects like religion may be difficult to determine their attitude towards the waitlist, due to cultural norms or regulations that may interfere, or whether there is a possibility of them not wanting to donate or are not willing to accept any donations. In this case, demographics within donors and waitlist patients are relevant, which are recorded in Table 2 below
Table 2: Donors & Patients
Non-Demographics Results
For the second section of the survey, the question focuses on the waitlisted patients by understanding their barriers, medical history, and time in the waitlist. There are 7 participants who are registered inside an organ waitlist with different specified times. However, for easier comparison and contrast, choices were given in a time range with a follow up question of what specific organ do they require a transplant to be conducted. This is important to record which types of organs are most common to be transplanted, potentially affecting allocation processes. The table below shows these results.
Understanding and knowledge-based questions:
This section highlights the prospective areas from all participants' viewpoints on the current waitlist system. Analyzation will be conducted into donors, non-donors, and patients viewpoints. This will ensure that opinions can be differentiated and we can analyze if those attributes may affect responses. Table 3 below shows non-donors.
Table 3: Non-donors
Table 4: Donors & Patients
All eight of these participants responded which gives a more comparable answer than non-donors. Most are familiar with the process most likely as they have gone through it and experienced it themselves. According to the patients and donors, race does and does not affect the process but wealth and social status affects it greatly with 37.5% selecting five in the Likert Scale. Additionally, the allocation of organs is directed towards the sickest patient first with 75%, and most of them experience concern regarding if they donated an organ to whom it would be distributed. Finally, they have a wide variety of opinions on the last question.
Perceptions of Fairness
For the last section of the survey, it focuses on criticisms towards the waitlist if they have any. It allows the participants to pause and think about what to answer under their own knowledge on the waitlist system. These questions are more ‘ethical’ and ‘controversial’, which allows for observation regarding the public's perspectives and transparency of the system. Hence, this observation is objected to areas of improvement towards the waitlist which also can address potential misunderstandings.
Table 5: Non-donors
Table 6: Donors & Patients
Discussions and Future Directions
Combining all results together to support the hypothesis that demographics affects attitudes is difficult to derive, but considering everyone of participants has different determinants and ideology they follow, this study offers a new perspective. The demographic data was collected and analyzed, 93% although were not a donor and has no personal self-experience potentially not even aware of this issue, majority proceed to truthfully answer the survey. Prior to the beginning of data collection, I expected demographics would clearly show and indicate different behaviours. However, after the data collection, demographics show little contribution compared to the effect of people’s own knowledge and past experiences. Even though certain trends may still be noticeable, such as only some religion consented to be part of the organ waitlist, or the range of ages which is most commonly affected with health complications to be included in the waitlist.
A common study was conducted, “Attitudes toward Organ Donation and Donor Behavior: A Review of the International Literature,”(Wakefield, C. E) concerning organ donors and their opinions towards willingness to donate, deceased organ donation, and donor behaviour. Many of these results however are uncorrelated to the main cause of organ shortage, which is the efficiency within the system itself, the system where thousands die annually in the globe due to not only shortage in donated organs but also the misconceptions. Additionally, nearly half held misconceptions about the allocation process, and only a few had a background about this topic to begin with. These findings highlight an opportunity to enhance donation rates among waitlisted patients through provider-led education.
This study also shows based on results that donors and patients emphasize the importance of equity and the factors contributing to order of allocation such as medical urgency, however non-donors emphasize on the lack of transparency or how demographics brings forth ethical issues. The findings highlight the need for increased public education and policy enhancements to improve trust in the organ allocation process. Addressing misconceptions, increasing transparency, and ensuring equitable access to organs can help build confidence in the system and encourage higher donor registration rates. Additionally, reforms that minimize socioeconomic disparities in organ allocation could further enhance perceptions of fairness.
This study is not fully complete and hasn’t developed definitive evidence as there are not enough participants to do so. Furthermore, this study fails to identify a definitive trend in demographics as the research question highlights their opinions more. However, ‘attitudes’ within participants are inclusive towards demographics as well. Hence, although some microtrends can be observed, it may be valuable to further investigate and use a specific range of data used for specifically analyzing demographics, such as but not limited to: ANOVA table, standard deviation, mean values. As a result, this study scratches the surface of ‘attitudes’ in different types of participants and aims in the future to investigate more in depth.
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