Australian nephrologists attitudes towards living kidney donation

Transcription

1 Nephrol Dial Transplant (2006) 21: doi: /ndt/gfl029 Advance Access publication 20 February 2006 Dialysis and Transplantation News Australian nephrologists attitudes towards living kidney donation Joan Cunningham 1,2, Alan Cass 2,3,4, Kate Anderson 3, Paul Snelling 5, Jeannie Devitt 1,6, Cilla Preece 3 and Josette Eris 4,5 1 Menzies School of Health Research and Institute of Advanced Studies, Charles Darwin University, Darwin, 2 School of Public Health, University of Sydney, Sydney, 3 The George Institute for International Health, Sydney, 4 Central Clinical School, University of Sydney, Sydney, 5 Statewide Renal Services, Royal Prince Alfred Hospital, Sydney and 6 Cooperative Research Centre for Aboriginal Health, Darwin, Australia Abstract Background. The demand for deceased donor kidneys far outweighs the supply. The rate of living kidney donation (LKD) has been steadily increasing worldwide and is associated with excellent outcomes for the recipient. With respect to donors outcomes, however, a strong evidence base is lacking. This study explores the attitudes and perceptions of Australian nephrologists towards LKD, specifically regarding donor risk, their willingness to recommend LKD and their own preparedness to become a live donor. Methods. A postal survey of Australian nephrologists was conducted. Responses to six multiple choice questions about LKD were collected as a separate focus of a larger study. Results. We achieved a survey response rate of 52.4% and analysed responses from 184 practicing nephrologists and trainees. Australian nephrologists and trainees were generally supportive of LKD. The vast majority (95%) of respondents indicated that they would recommend it to a suitable donor or would themselves (97%) donate a kidney to an immediate family member. However, fewer than half (43%) would recommend LKD to a potential donor, where their relative s end-stage kidney disease (ESKD) had been attributed to diabetes and where there was a strong family history of diabetes. A minority thought that LKD increased the donor s risk of mortality (12%) or of ESKD (25%). Few nephrologists (4%) indicated their preparedness to be an altruistic donor to a recipient unknown to them. Conclusions. Although LKD is clearly supported by the nephrologists, the increasing incidence of ESKD attributable to diabetes, now the leading cause of ESKD in Australia, might, however, progressively Correspondence and offprint requests to: Dr Alan Cass, Head, Renal Program, The George Institute for International Health, PO Box M201 Missenden Rd, Sydney NSW 2050, Australia. acass@thegeorgeinstitute.org limit its use. Meeting the growing demand for kidney transplantation will require an increased supply of both live and deceased donor kidneys. We should develop, evaluate and implement best-practice approaches to achieve this. Keywords: access; attitudes to treatment; living related kidney transplantation; nephrologists; organ donation Introduction While kidney transplantation is the optimal treatment for many patients with end-stage kidney disease (ESKD), it is generally the case that the demand for deceased donor kidneys far outweighs the supply. In the UK, over the decade till 2004, the number of people registered on the active transplant list increased by 30% to Over the same period, the number of deceased donor transplants fell by 16% to 1386 per year [1]. Similar patterns have been observed in USA, Australia and many other countries, with burgeoning transplant waiting-lists and patients spending ever longer waiting periods on dialysis [2,3]. Increased time on dialysis prior to transplant is, however, associated with higher rates of kidney failure 12 months after transplantation [4] and with decreased survival of transplant recipients [5,6]. An alternative to the use of deceased-donor kidneys is donation from live donors. The rate of living kidney donation (LKD) has been steadily increasing worldwide. In developed countries, kidney donors are not usually paid. Kidneys are usually donated to a first-degree relative or a close, but non-related, friend or colleague. In the UK, in , 450 live donor transplants were performed 22% of kidney transplants [1]. In Australia and in the USA, live ß The Author [2006]. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved. For Permissions, please journals.permissions@oxfordjournals.org

2 Australian nephrologists attitudes towards living kidney donation 1179 donation constitutes, respectively, 40 and 44% of transplant activity [7,8]. Given the chronic shortfall in deceased donor kidneys in many countries, boosting the rate of LKD has the potential to ease the mounting personal and financial burden of ESKD. A major benefit of LKD is the greater graft success compared with deceased donor transplantation. This is largely due to the very short time between kidney removal and transplantation [9] and the consequent minimal damage to the donor kidney due to interrupted blood supply [2]. However, advantages to the recipient must be balanced against the potential risks to donors. Nephrologists play a crucial role in educating their patients about the option of transplantation and in facilitating LKD. Their attitudes and their perceptions of the risks to donors are important determinants of its utilization. Such attitudes and perceptions have previously not been systematically investigated. In this study, we aimed to explore Australian nephrologists perception of the risks to donors, their willingness to recommend LKD as a treatment option and their own preparedness to donate a kidney. Subjects and methods Study design and population A survey form was posted to all the members of the Australian and New Zealand Society of Nephrology (ANZSN) with an Australian mailing address (n ¼ 389). Although ANZSN includes both clinicians and non-clinicians among its members, we were not able to identify and exclude non-clinicians from the mailing list. The cover of the fourpage survey instrument included a letter from the President of the ANZSN encouraging participation by clinicians. The survey form was initially distributed in August A second copy was sent to all eligible members approximately 6 weeks later (September 2004) and a third copy to non-responders, Table 1. Questions on LKD approximately 2 months later (November 2004). A reply-paid envelope was enclosed in all survey packets. No financial incentives were offered. The study was conducted as part of IMPAKT (Improving Access to Kidney Transplants), a programme of research examining the factors associated with Aboriginal and Torres Strait Islander patients reduced access to kidney transplants [10]. Survey content Respondents were asked their age, sex, country of birth, country of nephrological training, current professional status (practicing nephrologist, nephrology trainee or other), years in practice post-training, their primary treatment modality for ESKD and the estimated proportion of their patients in four ethnic categories (Caucasian, Asian, Indigenous and other). Each was also asked to indicate, for their primary hospital/facility, its location, whether public (i.e. statefunded) or private, and if renal transplants were performed there. Respondents were asked several questions about their attitudes towards LKD (Table 1). Statistical analysis Analysis was limited to respondents who indicated that they were either a practicing nephrologist or a trainee, and who responded to at least one of the six questions relating to LKD. Univariate, bivariate and multivariate analyses were performed using Stata Version 7 (Stata Corporation, College Station, TX, USA). Chi-square tests and logistic regression were used to examine the relationship of various characteristics of the respondents to their answers. Independent variables were examined individually using simple logistic regression and after adjusting for other factors using multiple logistic regression. As such, adjustment did not appreciably alter any of the results, only unadjusted results of simple logistic regression analyses are presented here. Please answer the following questions regarding LKD under the assumption that the potential donor has been appropriately deemed medically and psychologically suitable to be a living donor. In your opinion, when compared to age- and sex-matched healthy controls, the long-term risk of mortality caused through being a living kidney donor is: Reduced œ Unchanged œ Increased less than 50% œ Increased 50 99% œ Increased 100% or more œ Unsure œ In your opinion, when compared to age- and sex-matched healthy controls, the long-term risk of developing ESKD caused through being a living kidney donor is: Reduced œ Unchanged œ Increased less than 50% œ Increased 50 99% œ Increased 100% or more œ Unsure œ I am willing to recommend to a (medically and psychologically suitable) relative of an ESKD patient that they become a living kidney donor: I am willing to recommend to a (medically and psychologically suitable) relative of an ESKD patient (whose ESKD has been attributed to type II diabetes and who has a strong family history of diabetes) that they become a living kidney donor: If I were deemed medically and psychologically suitable to be a living kidney donor, I would donate a kidney to an immediate family member: If I were deemed medically and psychologically suitable to be a living kidney donor, I would donate a kidney altruistically, to the best-matched person on the waiting-list, but who is not known to me:

3 1180 J. Cunningham et al. Results worked in a major metropolitan area and were born and trained in Australia. Of the 389 ANZSN members who were sent a survey form, 204 (52.4%) returned a completed form. Of these, 20 were excluded from analysis, either because they were not practicing nephrologists or trainees (n ¼ 18) or because they did not respond to any of the questions on LKD (n ¼ 2). Responses from 184 participants (47.3% of ANZSN members) were available for analysis. There were no significant differences in response rates according to sex or age. The characteristics of responding nephrologists and trainees are presented in Table 2. The majority were male, over 40 years old, Table 2. Characteristics of survey respondents (n ¼ 184) Number (%) Sex Male 142 (77) Female 42 (23) State/territory New South Wales/Australian Capital Territory 66 (36) Victoria/Tasmania 61 (33) Queensland 21 (11) South Australia/Northern Territory 19 (10) Western Australia 15 (8) Not stated 2 (1) Country of birth Australia a 135 (73) Other 49 (27) Age Less than 40 years 66 (36) 40 years and over 116 (63) Not stated 2 (1) Years in practice post-training (32) (14) (22) 20 or more 60 (33) Whether trained in Australia b Yes 172 (93) No 12 (7) Professional status Practicing nephrologist 160 (87) Trainee 24 (13) Location of practice Capital city or other metropolitan area 169 (92) Non-metropolitan area 15 (8) Whether renal transplants performed at respondent s primary facility Yes 127 (69) No 57 (31) Whether respondent s primary treatment therapy includes transplant Yes 166 (90) No a 18 (10) Whether respondent s primary facility is public Yes 173 (94) No 11 (6) Ethnically diverse patient group c Yes 23 (12) No a 161 (88) a Includes not stated. b At least in part. c Whether 50% or more of respondent s patients are reported to be non-caucasian (Indigenous, Asian or other). Risk of mortality and of ESKD for living kidney donors (Table 3) Overall, 12% of respondents thought that kidney donation raised the risk of mortality for donors most Table 3. Whether Australian nephrologists and trainees think living kidney donors risk is increased Proportion of respondents (%) a Increased risk of mortality (n ¼ 184) Increased risk of ESKD (n ¼ 181) Overall Sex Male Female 7 27 Country of birth Australia b Other Age 40 years or more Yes No b c Years in practice post-training d or more e Whether trained in Australia f Yes No 8 17 Professional status Practicing nephrologist Trainee Location of practice Capital city or other major metropolitan area Non-metropolitan area Whether renal transplants performed at respondent s primary facility Yes No Whether respondent s primary treatment therapy includes transplant Yes No b Whether respondent s primary facility is public Yes No 0 9 Ethnically diverse patient group g Yes 4 21 No b a Proportion of respondents reporting they think the risk is increased (either <50%, 50 99% or 100% or more). Unless otherwise indicated, responses for each group are not significantly different to the reference group (at P<0.05). b Includes not stated. c P ¼ for comparison with respondents aged 40 years or over in a simple logistic regression model. d P ¼ for comparison with respondents who have been in practice for 20 or more years in a simple logistic regression model. e The reference category. f At least in part. g Whether 50% or more of respondent s patients are reported to be non-caucasian (Indigenous, Asian or other).

4 Australian nephrologists attitudes towards living kidney donation 1181 of the respondents who perceived an increased risk indicated that they believed that it was increased by less than 50% compared to healthy age- and sex-matched controls. Reporting an increased perception of risk did not differ significantly according to the characteristics of the respondent. Respondents were more likely to believe that donors faced an increased risk of ESKD. Most of the 25% of respondents who perceived an increased risk indicated that they believed the risk to increase by less than 50%. Younger respondents (34% for those aged less than 40 vs 20% for those aged 40 years or more, P ¼ 0.038) and those with fewer years in practice post-training (36% for those with 0 5 years in practice vs 18% for those with 20 or more years, P ¼ 0.037) were significantly more likely to perceive an increased risk of ESKD for donors. Whether or not the respondent would recommend LKD (Table 4) The vast majority (95%) indicated that they would be willing to recommend LKD to a medically and psychologically suitable relative of an ESKD patient. This contrasts with the 43% who would be willing to do so if the patient s ESKD was attributed to diabetes and if there was a strong family history of diabetes. Younger respondents (33% for those aged less than Table 4. Whether Australian nephrologists and trainees would recommend LKD Proportion of respondents (%) a For a patient s relative (n ¼ 184) For a patient s relative with a strong family history of diabetes (n ¼ 181) For themselves to a family member (n ¼ 184) Overall Sex Male Female Country of birth Australia b Other Age 40 years or more Yes c 97 3 No b Years in practice post-training d e or more f Whether trained in Australia g Yes No Professional status Practicing nephrologist Trainee h Location of practice Capital city or other major metropolitan area Non-metropolitan area Whether renal transplants performed at respondent s primary facility Yes No Whether respondent s primary treatment therapy includes transplant Yes No b Whether respondent s primary facility is public Yes No Ethnically diverse patient group i Yes No b For themselves altruistically (n ¼ 183) a Proportion of respondents reporting they strongly agree or agree. Unless otherwise indicated, responses for each group are not significantly different to the reference group (at P<0.05). b Includes not stated. c P ¼ for comparison with respondents aged less than 40 years in a simple logistic regression model. d P ¼ for comparison with respondents who have been in practice for 20 or more years in a simple logistic regression model. e P ¼ for comparison with respondents who have been in practice for 20 or more years in a simple logistic regression model. f The reference category. g At least in part. h P ¼ for comparison with practicing nephrologists in a simple logistic regression model. i Whether 50% or more of respondent s patients are reported to be non-caucasian (Indigenous, Asian or other).

5 1182 J. Cunningham et al. 40 vs 49% for those aged 40 years or more, P ¼ 0.046) and those with fewer years in practice (34% for those with 0 5 years in practice vs 61% for those with 20 or more years, P ¼ 0.004) were significantly less willing to recommend LKD when diabetes was a factor. Almost all (97%) indicated that they would be prepared to be a live kidney donor for an immediate family member. This varied slightly with the characteristics of the respondent. In contrast, 4% indicated their preparedness to be an altruistic donor volunteering to donate a kidney to be used by the best-matched person on the waiting-list, but who was not known to them. Discussion LKD has the potential to reduce the adverse economic, social and health consequences associated with the shortage of kidneys available for transplantation. Our results show an overwhelming support of LKD by Australian nephrologists and trainees (hereafter simply referred to as nephrologists) who participated in the study. However, this support is not unqualified, as is indicated by responses relating to patients with a family history of diabetes. In addition, although there was no evidence of response bias by age or sex, the relatively modest response rate means that we cannot be certain that the attitudes expressed by the survey respondents are held by all Australian nephrologists. Approximately one in eight participating Australian nephrologists indicated their belief that living kidney donors had an increased risk of mortality. Although there is no compelling evidence of an increased risk of mortality for donors [11 16], most studies to date have been small, have had substantial loss to follow-up and/or have lacked an appropriate comparison group. While some studies have reported a survival benefit for donors in comparison to the general population [11,12], the donors are likely to be healthier than the general population, and the apparent survival benefit might be due, in large part, to the systematic screening, selection and follow-up of donors [11,13,16]. One in four participating Australian nephrologists indicated their belief that the risk of ESKD is increased for donors. The evidence to date is inconclusive. In general, studies have reported that, for most donors, kidney function remained normal postdonation [13,15]. However, some cases of progressive kidney disease have been reported, as well as donors subsequently being wait-listed for kidney transplant [13,15,17]. A systematic approach is needed to the collection of long-term outcome data concerning donors. Such an approach is exemplified by the recent establishment of a National Living Donor Registry by the Australia and New Zealand Dialysis and Transplant Registry. In the absence of a strong evidence based on the longterm outcomes for living donors, the assessment of the attitudes and beliefs of nephrologists provides an expedient, if limited, gauge of LKD s perceived risks and limitations. In the present survey, a significant group expressed concern about recommending LKD for patients with familial type-ii diabetes. These concerns were reflected in discussion at an international forum of transplant physicians and nephrologists on the care of living kidney donors, held in Amsterdam in 2004 [18]. The medical community still needs to develop clinically useful algorithms for predicting the future development of type-ii diabetes, so that nephrologists can more safely advise prospective donors [19]. Even with improved prediction tools and a stronger evidence base, advice to prospective donors should respect their autonomy and their preparedness to accept some degree of personal risk in exchange for the strong likelihood of benefit to the recipient, most commonly an immediate relative. Type-II diabetes is now the leading cause of treated- ESKD in a number of developed countries. In USA, diabetes is the primary aetiology in approximately 44% of new ESKD patients [20]. In 2004 in Australia, diabetes overtook glomerulonephritis as the leading cause of new ESKD cases [7]. Although reporting of comorbidity data through the UK Renal Registry remains incomplete, 21.4% of new ESKD patients in 2002 had diabetes [21]. In light of this trajectory, the concerns conveyed by a substantial group of respondents about recommending LKD for patients with familial type-ii diabetes might mean that nephrologists willingness to offer LKD as a treatment option will become progressively limited to fewer patients. Four percent of nephrologists indicated a preparedness to become an altruistic living donor. This is in stark contrast to the 97% who indicated preparedness to donate a kidney to an immediate relative. The perception of a very small, but not negligible, risk of post-operative complications appears to be outweighed by the expectation that one s relative would gain a significant and lasting health benefit. When considering donation to a stranger, the benefit side of the equation might seem much less real. Currently, altruistic donors provide an exceptionally small, but growing, proportion of kidneys. Surveys of the general public have found that between one-quarter to one-half of the adults said they would probably or definitely be prepared to become an altruistic living donor [22,23]. However, given that most nephrologists are themselves unwilling to entertain this option, it would seem ethically questionable for them to advocate programmes to improve public awareness of altruistic donation as a means of increasing the size of the pool. LKD is clearly supported by Australian nephrologists. However, in view of the growing worldwide epidemic of diabetes [24], the nephrologists expressed reluctance to recommend LKD for patients whose ESKD is due to diabetes tempers enthusiasm that LKD might provide an easy answer to the shortage of kidneys for transplantation. It is noteworthy that some countries, such as Spain, have been able to achieve significantly higher deceased donor rates. In other countries, including Australia, we need to enhance our efforts to increase the availability of kidneys from deceased donors, through campaigns to increase public

6 Australian nephrologists attitudes towards living kidney donation 1183 awareness of kidney disease and acceptance of organ donation. Perhaps even more importantly, we need to develop and implement best-practice approaches to increasing the access to transplantable organs. The US Department of Health and Human Services Organ Donation Breakthrough Collaborative has established a system-wide programme to learn, adapt, redesign, implement, track and refine organ donation processes to achieve donation rates of 75% or higher of potential deceased donor organs [25]. Such programmes should be piloted and evaluated for large-scale implementation in other developed countries, including Australia. Ultimately, only an increased supply of both live and deceased donor kidneys will improve access to transplantation for the increasing number of suitable ESKD patients. Acknowledgements. Prof. David Harris, President of the ANZSN, wrote a letter of support for the survey and the ANZSN secretariat provided assistance to the IMPAKT research team. Dr Peter Arnold assisted in the preparation of this article. This study was undertaken as part of the IMPAKT study, funded by the Australian National Health and Medical Research Council (NHMRC), project grant # J.C. is supported by an NHMRC Career Development Award # Conflict of interest statement. None declared. References 1. NHS UK Transplant. More transplants new lives: Transplant activity in the UK, NHS UK Transplant, Magee CC, Pascual M. Update in renal transplantation. Arch Intern Med 2004; 164: ANZOD Registry. ANZOD Registry Report Adelaide: ANZOD Registry, Briganti EM, Wolfe R, Russ GR, Eris JM, Walker RG, McNeil JJ. Graft loss following renal transplantation in Australia: is there a centre effect? Nephrol Dial Transplant 2002; 17: Cosio FG, Alamir A, Yim S et al. Patient survival after renal transplantation: I. The impact of dialysis pre-transplant. Kidney Int 1998; 53: Goldfarb-Rumyantzev A, Hurdle JF, Scandling J et al. Duration of end-stage renal disease and kidney transplant outcome. Nephrol Dial Transplant 2005; 20: ANZDATA Registry. ANZDATA Registry 28th Annual Report Adelaide: ANZDATA Registry, Department of Health and Human Services, United Network of Organ Sharing, University Renal Research and Education Association Annual Report of the US Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients: Transplant Data Rockville, MD, Asderakis A, Augustine T, Dyer P et al. Pre-emptive kidney transplantation: the attractive alternative. Nephrol Dial Transplant 1998; 13: Cass A, Devitt J, Preece C et al. Barriers to access by Indigenous Australians to kidney transplantation: the IMPAKT study. Nephrology 2004; 9: S144 S Fehrman-Ekholm I, Elinder CG, Stenbeck M, Tyden G, Groth CG. Kidney donors live longer. Transplantation 1997; 64: Holdaas H, Hartmann A, Leivestad T, Fauchald P, Brekke IB. Mortality of kidney donors during 32 years of observation. J Am Soc Nephrol 1997; 8: 685A 13. Hartmann A, Fauchald P, Westlie L, Brekke IB, Holdaas H. The risk of living kidney donation. Nephrol Dial Transplant 2003; 18: Najarian JS, Chavers BM, McHugh LE, Matas AJ. 20 years or more of follow-up of living kidney donors. Lancet 1992; 340: Ramcharan T, Matas AJ. Long-term (20 37 years) follow-up of living kidney donors. Am J Transplant 2002; 2: Sommerer C, Morath C, Andrassy J, Zeier M. The long-term consequences of living-related or unrelated kidney donation. Nephrol Dial Transplant 2004; 19 [Suppl 4]: iv45 iv Ellison MD, McBride MA, Taranto SE, Delmonico FL, Kauffman HM. Living kidney donors in need of kidney transplants: a report from the organ procurement and transplantation network. Transplantation 2002; 74: Delmonico F. A report of the Amsterdam forum on the care of the live kidney donor: data and medical guidelines. Transplantation 2005; 79 [Suppl 6]: S53 S Davis CL. Evaluation of the living kidney donor: current perspectives. Am J Kidney Dis 2004; 43: US Renal Data System Annual Data Report: Atlas of End-Stage Renal Disease in the United States. Bethesda: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, UK Renal Registry. The UK Renal Registry Report 2004, Landolt MA, Henderson AJ, Gourlay W et al. They talk the talk: surveying attitudes and judging behavior about living anonymous kidney donation. Transplantation 2003; 76: Spital A. Should people who donate a kidney to a stranger be permitted to choose their recipients? views of the United States public. Transplantation 2003; 76: Zimmet P, Alberti KG, Shaw J. Global and societal implications of the diabetes epidemic. Nature 2001; 414: United States Department of Health and Human Services. Organ Donation Breakthrough Collaborative: from best practice to common practice, 2005 Received for publication: Accepted in revised form: