|Year : 2020 | Volume
| Issue : 4 | Page : 739-749
|Survey of Patient’s Experience of Altruistic Nondirected Kidney Donation
Katharina J Schumacher1, Sarah Stacey2, Jacob A Akoh3
1 Department of Surgery, Derriford Hospital, University Hospitals Plymouth NHS Trust, Plymouth PL6 8DH, UK
2 Department of South West Transplant Centre, Derriford Hospital, University Hospitals Plymouth NHS Trust, Plymouth PL6 8DH, UK
3 Department of Surgery; Department of South West Transplant Centre, Derriford Hospital, University Hospitals Plymouth NHS Trust, Plymouth PL6 8DH, UK
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|Date of Submission||19-Dec-2018|
|Date of Acceptance||22-Jan-2019|
|Date of Web Publication||15-Aug-2020|
| Abstract|| |
The scarcity of organs for donation is an ongoing issue. Change in legislative framework allows for altruistic donations in the UK, but, whereas the number of donations from deceased donors has increased, there has been a slow decline in altruistic living donors. The aim of this study was to review perspectives of altruistic nondirected kidney donors (ANDKD) at our center and outcome of all enquiries to inform service improvement and increase the numbers of donors. All enquiries by potential ANDKD at our center from September 2005 to September 2017 were analyzed. Donor assessment was performed as per the UK Guidelines, prior to obtaining Human Tissue Authority approval. The outcome of donation and results of questionnaires sent to 50 ANDKD were analyzed. During the period, 51 of the 180 enquiries (28.3%) resulted in kidney donation. Questionnaire responses were: 66% donors were retired; most heard about altruistic donation through media (60%); 72% thought psychological or psychiatric assessment was necessary; 95% found the information provided prior to donation adequate; 82% rated their overall experience as good/excellent; and 90% would recommend kidney donation to others. Thirteen of 50 donated kidneys were fed into the kidney exchange program. The mean ± standard error of the mean of the duration from human tissue authority approval to donation were 60.4 ± 5.4 and 131.2 ± 11.2 days, respectively (P = 0.00001). A significant proportion of enquiries for altruistic donation would result in donation but the assessment process needs to be quicker. ANDKD is useful way of priming the National Living Donor Kidney Sharing Scheme.
|How to cite this article:|
Schumacher KJ, Stacey S, Akoh JA. Survey of Patient’s Experience of Altruistic Nondirected Kidney Donation. Saudi J Kidney Dis Transpl 2020;31:739-49
|How to cite this URL:|
Schumacher KJ, Stacey S, Akoh JA. Survey of Patient’s Experience of Altruistic Nondirected Kidney Donation. Saudi J Kidney Dis Transpl [serial online] 2020 [cited 2020 Sep 23];31:739-49. Available from: http://www.sjkdt.org/text.asp?2020/31/4/739/292307
| Introduction|| |
Chronic kidney disease (CKD) is a major public health problem worldwide, with about 19.4 million suffering from the advanced form (Stages 4 and 5) of the disease. CKD affects about 3 million people in the United Kingdom where 7814 patients started renal replacement therapy in 2015. The activity report for the UK Blood and Transplant 2016–2017 shows that whereas the number of donors after brain death and donors after circulatory death have increased over the past four years, there has been a slow but steady fall in the number of living donors. The continuing scarcity of organs for transplantation coupled with advances in technology and changes in the legislative framework in the UK have encouraged more opportunity and choice in the options for living donor kidney transplantation. Kidney transplantation from a living donor is associated with improved function, increased patient survival, and lowers health costs. Altruistic nondirected kidney donors (ANDKD) are able to donate their kidneys to strangers; thereby, increasing the number of available organs for transplantation. Such kidneys can be used for priming paired/complex exchange programs [National Living Donor Kidney Sharing Scheme (NLDKSS)] set up to address challenges with biological or human leukocyte antigens incompatibility in donor-recipient pairs.,, On average, nondirected donors can trigger five transplantations to occur. The long-term physical and psychological outcomes for ANDKD are comparable to directed donation, with a similar complication and mortality profile.
The motivation and decision to partake in altruistic kidney donation have not been fully studied, particularly the impact of religion.,,, The initial reaction of the profession and public to the development of ANDKD was that only people who were mentally unstable would consider such gifting hence the suggestion for rigorous psychological and psychiatric assessment.,, However, the profession and public now appear to value ANDKD as a useful resource for addressing the organ shortage problem. Since inception in 2006, about 634 ANDKD have taken place in the UK (financial years 2007–2017). The question is how can this program be made bigger?
The aim of this project was to review ANDKD enquiries at our center to determine useful ways of optimizing the service while increasing the numbers of donors. Perspectives of donors were collected of the process of donation to inform and improve service provision.
| Materials and Methods|| |
Donor assessment and preparation were performed as per the UK guidelines, including mental health and local independent assessment, prior to obtaining human tissue authority (HTA) approval. Following enquiry, potential donors were sent the “Living Kidney Donation: Your Questions Answered. Gift of Life” booklet; other National Health Service Blood and Transplant leaflets about altruistic donation and the kidney sharing scheme; and a health questionnaire to complete and return if they wanted to arrange an initial appointment with the living donor transplant coordinator. All donors underwent either psychological and/or psychiatric evaluation as part of the predonation assessment.
We analyzed all enquiries made by potential ANDKD at our center over a 12-year period (September 2005–September 2017). The outcome of each enquiry was recorded. Of those who completed the pathway and ultimately donated the time frame of different stages in the donation pathway was analyzed.
A 14-item questionnaire (Appendix 1) was sent to all 50 ANDKD who donated during a 10-year period between October 2007 and September 2017. Prestamped envelopes were sent along with the questionnaires to facilitate returns. Demographic information including employment status about the donors was captured. Specifically attitudes toward psychological/psychiatric evaluation, rating of the donation process and whether they felt they had been provided adequate information were ascertained. Furthermore, donors were asked if their feelings about donation had changed and whether they would recommend ANDKD to others. Recovery time to their normal level of activity and complications from donation was also captured.
The variation in number of enquiries over the years was analyzed including factors influencing these. Progression along the assessment pathway, donation, and reasons why the remaining did not proceed to donation were recorded. The timeframe from initial contact until date of completion of donor assessment (HTA approval) was calculated for each donor. Furthermore, the intervals from HTA approval to actual donation to recipients whether in an exchange program (chain) or not (nonchain) were recorded. Differences in the mean waiting times after HTA approval were compared for donors to recipients within or without paired/ complex exchange programs. Both quantitative and qualitative analyses of the responses were performed. Statistical analysis was performed to compare perceptions of the donation process between employed and retired donors (Fischer’s exact test). Comparison of means was performed using Excel pivot table. P < 0.05 was considered statistically significant.
| Results|| |
There were 180 enquiries between September 2005 and September 2017. Enquiries by potential ANDKD were closely related to health education or awareness campaigns [Figure 1]. For example, the increased media coverage in 2007 when the second altruistic donor in the UK met her recipient; in 2010/2011 when the Give a Kidney Charity launched a website/ twitter service; publication of article written by donor on altruistic donation in the British Journal of Renal Medicine in 2011; press release from Plymouth NHS Trust around organ donation and transplantation which involved a radio interview with an altruistic donor and Living Donor Transplant Coordinator in April 2014; Sky News program on altruistic donation April 2014; Plymouth Herald article on altruistic donation June 2014; and BBC show highlighting organ donation and transplantation in January 2015; were all followed by a surge in enquiries regarding organ donation.
|Figure 1: Trend in number of enquiries for altruistic nondirected kidney donation showing rises in 2010 and 2014 (peaks in 2008, 2010, and 2015 correlate with public health campaigns).|
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Of the 180 enquiries, 73 did not respond to information sent to them and were excluded from the process [Figure 2]. One 17-year-old donor was excluded for being too young to give fully informed consent. One hundred and six proceeded into the predonation workup resulting in 51 (48.1%) donations, with 17 either being worked up or awaiting donation and 38 (35.8%) dropping out for various reasons. Of the 180 enquiries, 51 (28.3%) have already resulted in donations; and if the remaining 17 were to donate, the overall donation rate would rise to 68 (37.8%). One of the 180 enquiries was initially a directed altruistic donation to a specific person but due to incompatibility and multiple potential donors for the same recipient, he entered the pathway for nondirected altruistic donation and is awaiting donation. Another potential donor who was on the ANDKD pathway is awaiting directed donation at a different center. Following completion of the assessment process and prior to registering on to the NLDKSS the potential donor decided to offer her kidney to an identified potential recipient. Although this recipient subsequently received a deceased donor organ, the potential donor rather than continuing on the ANDKD pathway elected to identify another potential recipient. Her potential recipient is currently matched through the NLDKSS to proceed with donation.
|Figure 2: Flow chart of the assessment process for altruistic nondirected kidney donation.|
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During the study, 50 ANDKD (27 females; 23 males) were sent questionnaires. Of these 49 donors underwent hand-assisted laparos- copic donor nephrectomy while one had open nephrectomy. The duration ± standard error of the mean (SEM) (days) from initial contact with our unit and date of donation was an average of 360 days ± 20 days (range 146–747). The average time from date of enquiry to date of HTA approval was 281 ± 19 days (range 102-655) and HTA approval to date of donation was 78.8 ± 6.6 days (range 15–201).
On average 77% of time from enquiry to donation was spent prior to HTA approval and 23% post-HTA approval awaiting donation. Thirty-seven (74%) donated to nonchain recipients whereas 13 (26%) donated kidneys were used to prime a paired/complex exchange program. The mean ± SEM of the duration from HTA approval to donation were 60.4 ± 5.4 and 131.2 ± 11.2 days respectively (difference between means -70.8; 95% confidence interval -93.47 to -48.13; t = -6.2802; df = 48; P = 0.00001).
The age range of 50 donors who were sent the questionnaire was 22–82 with a mean ± SEM of 58 ± 1.7 years, median of 60. Thirty- nine completed questionnaires were returned giving a 78% (39/50) response rate. Of the 39 ANDKD, 20 (51%) were Christians, 13 (33%) had no religious orientation, one was a Buddhist and 5 (13%) did not declare their religious practice. Fifty-nine percent of ANDKD became acquainted with the idea of donation through the main news media [Table 1]. Three reported specifically that they became aware during a blood donation session and one through previous nursing experience.
Thirty-eight donors underwent psychological assessment while one donor underwent psychiatric evaluation only. Eight donors who had psychological assessment also proceeded to psychiatric evaluation. Twenty-eight (72%) donors found psychological and/or psychiatric assessment(s) useful and necessary, whereas 11 (28%) felt it was not. ANDKD who expressed dissatisfaction stated that they felt their decision or motivation questioned, the process was stressful and challenging and some even questioned the effectiveness of the psychological/psychiatric assessment.
The overall rating of the donation process is shown in [Table 2] and a more detailed analysis of responses according to employment status is shown in [Table 3]. Thirty-six out of 39 (92%) described no change in feelings about organ donation, but three (8%) stated that the lack of information about their potential recipient, realization that much more is needed to be done to raise awareness, and the less than excellent outcome of the organ transplant dampened their enthusiasm. Thirty-seven people felt that the information they were provided during the process was adequate, whereas two donors felt that is was not. These two stated that further information about the timescale of the donation process, more information on procedures and updates along the way of progression through the process, would have been helpful. There were no statistically significant differences in donor perception/response on the basis of employment status [Table 3].
For 34 out of 39 (87%) donors, the main motivation for donation was to save life, help others and improve quality of life. One donor expressed their reason for donation as to commemorate their mother who died in an air crash. Even though 20/39 identified as Christian, only one person highlighted their religion as motivation for donation. Qualitative responses are detailed in [Table 4].
The reasons why four ANDKD would not recommend donation to others were: donation was considered a personal choice; the process involved a lot of medical information but complete lack of timescale; inadequacy of information and regular updates during the long period of assessment; and lack of access to information about the outcome of the recipient of their organ.
Patient reported complications included incisional hernias in three; reduced sensation in an area of the thigh in one; wound infection/ infected hematoma in two (requiring antibiotic treatment); pneumonia necessitating hospital admission at two weeks’ postoperatively; and hypertension in one. Another donor was readmitted due to rigors with an inconclusive diagnosis (atelectasis). Two donors have died since donation, one from a traumatic farm accident 11 months after donation and the other died at home of an unknown cause four years after donating a kidney.
Suggested improvements included: nursing care postoperatively; early surgical follow-up; and home support during the recovery period. The recovery time ranged from two weeks to 28 weeks with a mean of 9.9 weeks and a mode of eight weeks (median also of 8 weeks). Only one donor reported loss in earnings of £2000.00.
| Discussion|| |
A significant number of enquiries (28.3%) or assessments (48%) resulted in donation compared to a previous study from our center where only 21.3% (65/305) of directed potential donors successfully donated. This may reflect the fact that the usual reasons for not progressing assessment such as ABO incompatibility, unacceptable antigens, the intended recipient being transplanted with a suitable deceased organ, recipient death or delisting do not apply to ANDKD. The demographics captured showed that large number of donors was retired with an average age of 58 years. Another study also found altruistic donors to be older compared to directed donors. This is an important factor to be considered in optimizing awareness programs for altruistic donations in the target cohort. More work would be needed to establish how best to encourage different demographics to donate. There was a lack of employed donors in our cohort. The reasons for this are unknown, however, there is a possibility that loss in earnings and/or loss of job may play a role in people deciding not to volunteer to donate. As employment and loss in earning may play a factor in choosing not to donate in younger years, it is possible that that easing the process of compensation for loss in earnings may encourage people to consider altruistic non- directed donation.
This study has highlighted some important areas for improvement in the assessment processes for living kidney donation. While the demographic that is represented amongst our donors is an important factor in maximizing advertisement targeted at groups potentially more likely to donate, the challenge is the use of effective means of educating the younger and employed people to consider donation. A significant number of donors heard about altruistic donation through newspaper, radio or television, which confirms these as important media to promote altruistic donation, increase awareness and ultimately lead to more altruistic donations. [Figure 1] shows that an active public health campaign about organ donation encouraged more people to consider donation. [Table 2] shows that communication through the internet and social media was a distant second behind the print media. This may reflect the information preferences of the predominantly older people who donated (selection bias). Other studies have highlighted the importance of social media as a means of spreading information and engaging people in health campaigns., The media provide an environment for emotional and intellectually compelling discussion that may motivate potential organ donors. Perhaps by targeting the social media users, we could improve the number of younger and employed persons engaging with ANDKD. Hajjar et al. performed a cross-sectional study among 1368 social media users living in Saudi Arabia and reported a significant effect on the information about organ donation and brain death. A survey of 299 members of the American Society of Transplant Surgeons showed that 83% of respondents used social media; and that respondents at transplant centers with higher reported use of social media had more favorable views about sharing information with transplant recipients, increasing awareness about deceased organ donation, and advertising for transplant centers.
There was a lack of donors from different socio-demographic backgrounds, including lack of non-Christians. This may reflect the fact that the local population is largely Caucasian. Whether the recent influx of minority ethnic people into the South West of England will translate to a more mixed population of donors in future remains to be seen. Understanding the characteristics of altruistic donors is a new area of research that will receive increasing attention in the coming years.,,
Twenty-six of 106 (24.5%) potential donors were declined for medical reasons. Whether this was due to age-related morbidity remains unclear. It is however, reasonable to assume that the proportion of potential donors declined for medical reasons would drop as the average age of potential donors was lowered thereby increasing the proportion of healthy individuals who would ultimately be fit and able to donate, resulting in increased number of donations. On the other hand, it must be borne in mind that despite the heightened need for donor organs, only people proved to be medically fit to do so were engaged. This is reassuring and it means the assessment process correctly weaned out medically unfit potential donors.
The interval between enquiry by a potential ANDKD and completion of the assessment process (HTA approval) and actual donation is about 360 days. This is considered to be too long and is a major concern to donors and possibly an impediment to donation. For example, it is not clear whether nine potential donors withdrew from the assessment process [Figure 2] due to delays. It is necessary to streamline the process and make donation possible sooner. The complexity of the organ donation process can make a quick process challenging. Although time may be a good indicator of commitment to the decision to donate, it is crucial to streamline the process, reduce the number of appointments, and complete the process in a shorter time frame in order not to discourage potential donors from completing the process and to improve rating of the donation process. Following implementation of a one-day assessment process in Northern Ireland, Graham and Courtney reported a dramatic and sustained increase in the rate of living kidney transplantation. A quality improvement work is being done in our center to drastically shorten the assessment process for potential living kidney donors by integrating clinical assessment, laboratory and imaging studies into the same hospital visit. However, even with such a measure, there may still be delays in donation as the process necessitated by entering ANDKD into paired or more complex exchange programs. This study shows that the average interval from HTA approval to actual donation is increased by 71 days if the potential donor is fed into a chain. Matching runs occur quarterly and organizing the operations in different centers may take more time. If the matching process is quicker without causing a delay for donation then it may be possible to attempt to feed every potential donor into a pairing scheme to increase the number of transplants each donation can trigger.
It is interesting to note that the majority of those who donated agreed with the necessity for psychological and/or psychiatric evaluation. Some highlighted that they felt the psychological assessment intrusive and disapproved with the way it was undertaken. As altruistic donation becomes more common and more widely accepted, the need for and the degree of psychological and/or psychiatric assessments may be less rigorous and variation in practice may be reduced. It is important that potential donors are never given the impression that their motivation is being questioned. Similar findings were highlighted by other studies., While it is worrying that three donors think less favorably about altruistic donation as a result of their experience, it is important to counterbalance this by the fact that no one had a bad/unsatisfactory experience [Table 3] and that the majority (90%) would recommend ANDKD to others. Despite some level of donor dissatisfaction with postoperative care and support, the comments about donation [Table 4] were highly positive, which is very encouraging for the future of altruistic nondirected donation.
There are important limitations to this study. First, the data are only from one center and only perspectives of participants proceeding to donation were analyzed. Even though this center is one of the top performing in terms of ANDKD in the UK, the sample size is small. Second, only 78% returned completed questionnaires. Third, there was no clinical psychologist available for 12 months between December 2015 and December 2016 and it is possible that a number of donors were not offered this service or were delayed in the assessment process. Despite the foregoing, the findings of this study highlight important ways of encouraging altruistic nondirected organ donation.
| Conclusions|| |
This survey shows that it is of crucial importance to monitor donor’s perceptions regarding the assessment process and highlights the necessity to streamline and make the process shorter while providing the right information and support for organ donation. ANDKD has the potential of increasing the actual donation rate of assessed potential donors with favorable implications for cost saving and increasing the number of living donor transplantations. It is also extremely viable as a means of priming the paired and more complex exchange programs.
Conflict of interest: None declared.
Appendix 1. Altruistic Living Kidney Donor Questionnaire.
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Jacob A Akoh
Department of Surgery, Derriford Hospital, University Hospitals Plymouth NHS Trust, Plymouth PL6 8DH
[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3], [Table 4]
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