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NDT Advance Access published online on May 25, 2007
Nephrology Dialysis Transplantation, doi:10.1093/ndt/gfm305
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© The Author [2007]. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

Transplant professionals vary in the long-term medical risks they communicate to potential living kidney donors: an international survey

A. A. Housawi1,2,3, A. Young1, N. Boudville1,4, H. Thiessen-Philbrook1, N. Muirhead1, F. Rehman1, C. R. Parikh5, A. Al-Obaidli6, A. El-Triki7, A. X. Garg1,2,8 and for the Donor Nephrectomy Outcomes Research (DONOR) Network{dagger}

1Division of Nephrology, University of Western Ontario, London, Canada, 2Department of Epidemiology and Biostatistics, University of Western Ontario, London, Canada, 3Department of Medicine, Umm Al-Qura University, Makkah, Saudi Arabia, 4School of Medicine and Pharmacology, University of Western Australia, Perth, Australia, 5Section of Nephrology, Yale University, West Haven, Connecticut, USA, 6Division of Nephrology, Sheikh Khalifa Medical City, Abu Dhabi, United Arab Emirates, 7Department of Nuclear Medicine, University of Western Ontario, London, Canada and 8Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Canada

Correspondence and offprint requests to: Amit Garg, London Kidney Clinical Research Unit, Room ELL-101, Westminster Tower, London Health Sciences Centre, 800 Commissioners Road East, London, Ontario, Canada N6A 4G5. Email: Amit.Garg{at}lhsc.on.ca



   Abstract
Top
 Abstract
Introduction
 Methods
 Results
 Discussion
 Acknowledgements
 References
 
Background. Discussing long-term medical risks with potential living donors is a vital aspect of informed consent. We considered whether there are global practice variations in the information communicated to potential living kidney donors.

Methods. Transplant professionals participated in a survey to determine which long-term risks are communicated to potential living kidney donors. Self-administered questionnaires were distributed in person and by electronic mail.

Results. We surveyed 203 practitioners from 119 cities in 35 different countries. Sixty-three percent of participants were nephrologists, and 27% were surgeons. Risks of hypertension, proteinuria or kidney failure requiring dialysis were frequently discussed (usually over 80% of practitioners discussed each medical condition). However, many practitioners do not believe these risks are increased after donation, with surgeons being less convinced of long-term sequelae compared with nephrologists (P < 0.01). About 30% of practitioners discuss long-term risks of premature cardiovascular disease or death with potential donors.

Conclusions. Transplant professionals vary in the long-term risks they communicate to potential donors. Improving consensus will enhance decision-making, and emphasize best practices which maintain good, long-term donor health.

Keywords: consent; donor nephrectomy; living kidney donation; long-term complications; risk communication; survey



   Introduction
Top
 Abstract
 Introduction
Methods
 Results
 Discussion
 Acknowledgements
 References
 
More assessments of potential living kidney donors are being conducted worldwide than ever before. In the United States, for example, the number of living kidney donors has now surpassed that of deceased donors [1].

Obtaining informed consent is mandatory prior to proceeding with an elective procedure such as donor nephrectomy. Transplant professionals aim to provide their patients with detailed and accurate information on the potential benefits and complications (both short- and long-term) of the procedure [2,3].

The short-term complications of donor nephrectomy are well described [4–6]. However, long-term risks of kidney donation (such as hypertension, proteinuria and renal impairment) are less certain, with different estimates in the literature [7–20]. In a recent published meta-analysis [19], blood pressure was 5 mmHg higher in donors than in control participants, with one out of six studies reporting an increase in the risk of hypertension [relative risk, 1.9 (95% CI, 1.1 to 3.5)]. Limitations of previous studies include a lack of appropriate control groups, incomplete follow-up and outcomes not defined according to modern diagnostic criteria [21–24]. Health care providers are, therefore, left with a notable uncertainty on long-term donor risks of the procedure. This uncertainty likely explains the variation in practice among health care providers and among transplant centres with regards to long-term risk estimation and, subsequently, living donor selection [25–29]. However, the degree to which this uncertainty has translated into practice variability has not been previously considered. Here we considered which long-term risks are communicated to potential donors by their practitioners, and whether this information differs across transplant centres around the world. We also assessed whether nephrologists and surgeons differ in their beliefs on these risks.



   Methods
Top
 Abstract
 Introduction
 Methods
Results
 Discussion
 Acknowledgements
 References
 
Participants
English-speaking transplant professionals (including nephrologists, surgeons, nurse practitioners and donor coordinators) who discussed long-term medical risks with at least one potential kidney donor in the prior year were eligible for survey participation. Although inviting all such practitioners worldwide to participate would have proven ideal, their contact information was not readily available. Instead, the self-administered 10-min survey was distributed to all potentially eligible practitioners we could readily identify. We used member lists of the American Society of Transplantation, the American Society of Transplant Surgeons and the European Society of Organ Transplantation. Additional contact information for practitioners in other countries was obtained through Internet searches. In total, the survey was distributed to 2727 potential participants, mainly via their unique e-mail addresses. Over 500 (521) e-mail messages were not returned as ‘undelivered’ mail (some accounts were no longer active, returned by mail providers’ spam protection system or addresses obtained were not correct). A total of 333 potential participants responded to our survey, of which 130 respondents were known to not fulfil the eligibility criteria. A participant was eligible to participate if they were involved in the process of informing potential living kidney donors of long-term risks, and were involved in the care of at least one potential living kidney donor during the previous year.

A total of 203 complete surveys were returned. The exact response rate could not be determined, as the ‘total’ number of received e-mail messages and the ‘total’ number of eligible people (for study participation) who actually received our questionnaires were unknown.

Survey
The survey questions were developed by a group of nephrologists and epidemiologists involved in the assessment of potential living kidney donors. Once developed, the questions were pilot tested on another group of physicians also involved in living donor assessments. Interviews with these physicians confirmed the survey questions were being interpreted correctly.

The first set of questions assessed participant demographics and methods by which information about long-term risks are discussed with potential donors. The next set of questions asked whether the practitioner discussed in some capacity the following long-term risks with potential living kidney donors: hypertension, proteinuria, chronic kidney disease (i.e. a glomerular filtration rate <60 ml/min), kidney failure requiring dialysis, premature cardiovascular disease and premature death not related to surgery. A final set of questions assessed whether the practitioner believed such risks were decreased, no different, or increased, compared to if a donor had elected not to have the nephrectomy. Survey questions are summarized in Table 1. The survey was conducted between February 2005 and March 2007.


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  		Table 1. Summary of questionnaire content

 
Analysis
Descriptive statistics and confidence intervals for single proportions were computed [30]. Chi-square tests were used to assess differences in opinions regarding the long-term risks by participant location and subspecialty. In cases where there were a small number of observations, Fisher's exact test was used. All analyses were conducted using SAS 9.1 (SAS Institute Inc., Cary, NC, USA).



   Results
Top
 Abstract
 Introduction
 Methods
 Results
Discussion
 Acknowledgements
 References
 
A total of 203 health eligible health practitioners from 119 cities in 35 different countries responded to the survey. Sixty-three percent of respondents were nephrologists, 27% were surgeons, 4% were nurse practitioners and 6% were other individuals involved in discussing risks with potential donors. Most transplant professionals were from North America (45.1%) (USA 39.6%, Canada 4.0%, Mexico 1.5%), followed by Europe (31.7%) (UK 8.4%, Germany 6.4%, Belgium 2.5%, Netherlands 2.0%, Czech Republic 2.0%, Norway 2.0%, France 1.5%, Italy 1.0%, Sweden 1.0%, Switzerland 1.0%, Denmark 0.5%, Finland 0.5%, Northern Ireland 0.5%, Poland 0.5%, Serbia 0.5%, Spain 0.5%, Cyprus 0.5%, Scotland 0.5%), Asia (14.4%) (Saudi Arabia 8.4%, India 1.0%, Korea 1.0%, Lebanon 1.0%, United Arab Emirates 1.0%, China 0.5%, Thailand 0.5%, Kuwait 0.5%, Syria 0.5%), Australia (4.5%), South America (2.5%) (Brazil 1.5%, Argentina 1.0%) and Africa (2.0%) (Egypt 1.5%, Libya 0.5%).

Prior to donation 95% of health care practitioners reported that written information is provided to potential donors and recipients to educate them about the living kidney donation process. Sixty-six percent of health practitioners reported that their centre has a special consent form for living kidney donation. In the majority of centres, written consent for donor surgical nephrectomy is obtained by the surgeon (70%). Consent was also obtained by the nephrologist or nephrology trainee (22%), nurse or nurse practitioner (6%) or other transplant professional (2%). An average of 45 living kidney donor transplants were performed at each centre in the year 2004 (median 30, range 1–644).

Risks of hypertension, proteinuria or kidney failure requiring dialysis were frequently discussed with potential living kidney donors; usually >80% of practitioners discussed each medical condition in some capacity (Table 2). However, many practitioners do not believe these risks are increased after donation (Table 3). When asked, between 21% and 55% of transplant professionals believe such risks are not increased after donation, with the exact number dependent on the outcome considered. Compared with nephrologists, surgeons were less convinced of long-term sequelae. For example, 50% of nephrologists vs 33% of surgeons believed the risk of hypertension was increased (P = 0.03). Similarly, 78% vs 58% believed the risk of microalbuminuria was increased (P = 0.004), while 62% vs 39% believed the risk of developing a glomerular filtration rate <60 ml/min was increased (P = 0.004).


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  		Table 2. Long-term medical risks discussed with potential living kidney donors

 

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  		Table 3. Health care provider opinion on the lifetime risk of the following medical conditions after becoming a living kidney donor

 
About 33% of practitioners also discuss the risks of premature cardiovascular disease and non-peri-operative death with potential donors (Table 2). However, >80% of practitioners believe donors have no higher risk of cardiovascular disease, than if they had elected not to go through with the procedure.

We observed a few differences across continents on the risks discussed by transplant professionals (hypertension P < 0.05, kidney failure P = 0.003; all other outcomes P > 0.18), or what was believed about these risks (hypertension P < 0.04, premature cardiovascular disease P = 0.005; all other outcomes P > 0.09). For example, compared with those practising in Asia, more transplant professionals in Europe, North America and South America discuss the risk of hypertension.



   Discussion
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
Acknowledgements
 References
 
Discussing long-term medical risks with potential living donors is a vital aspect of informed consent. While a majority of potential donors do not change their mind after learning about the risks of nephrectomy, a small percentage of people elect not to pursue donation and cite potential adverse health outcomes as an important factor in their decision [31]. Discussing long-term medical risks with individuals who eventually become donors also emphasizes the need for ongoing lifestyle modification and medical surveillance to maintain good long-term health. Here our results demonstrate that most, but not all, transplant professionals discuss risks for hypertension, proteinuria and kidney failure with potential kidney donors. Many practitioners do not believe these risks are increased after donation.

There are a number of potential reasons for the observed practice variability and lack of consensus. With different estimates in the literature [7–20], it remains difficult for practitioners to reach firm conclusions, and the truth remains uncertain. In the absence of external evidence, some practitioners may be relying on local practice experience, which naturally would differ across centres. Also, the observed variability could at least be partially explained by differences between programmes in the specialties of transplant professionals communicating such risks. For example, in many centres, the surgeon was responsible for obtaining the written consent for nephrectomy. These results highlight that surgeons are less convinced of long-term medical sequelae compared with nephrologists. These findings are consistent with a survey conducted by Beasley et al. [25]; indeed, physician perception of the risks and benefits of a procedure can be influenced by their background specialty, as evidenced in other areas of medicine [32].

To our knowledge, this is the first survey, to evaluate global practices in the estimation and communication of long-term risks to potential living kidney donors. To maximize the accuracy of responses, the questionnaire included simple items, questions, and answer choices.

However, we encountered three major practical limitations when executing the survey, which should be appreciated.

First, it was impossible to directly observe transplant professionals speaking to potential kidney donors. There is often a discrepancy between what busy physicians say they do, and what they actually do in real practice, with self-reported results more likely to describe model behaviour. Thus, the proportion of practitioners who do not discuss long-term medical risks with potential kidney donors may be even higher than reported here, increasing variability amongst the transplant centres.

Second, all English-speaking practitioners who discuss long-term medical risks with potential kidney donors were eligible for survey participation. However, it was impossible to generate a comprehensive mailing list of all such individuals worldwide. Transplant programmes differ in their organizational structure, and contact information for many centres outside North America and Europe was limited. While we used available member lists from transplant organizations to determine who to e-mail the survey to, we were never certain whether the e-mail was seen or whether all such individuals were even eligible for study participation. Thus, the exact response rate could not be determined, although it did appear to be low. In such cases, there is always the potential concern that data provided by those who participate systematically differs from those who do not participate. Although this limitation does not impact on our major finding that some practitioners vary in the long-term medical risks they communicate to potential living kidney donors, it may impact the precise estimates reported here.

Finally, our questionnaire was not designed to assess the exact nature of information communicated about long-term risks. We believed complex aspects of the discussion including determinants of risk, communication of uncertainty and magnitude of risk would be best considered using techniques of qualitative open-ended interviewing.

In conclusion, all individuals should have an equal chance of being entirely informed of all medical, psychological and financial benefits and harms prior to consenting to be a donor. Arguably, the recipient should also be provided such information, so they can make their preferences known when accepting a kidney from a family member, friend or stranger. Standardizing such information globally may not be possible, given the remarkable cultural and practice differences in countries across the world. However, it remains desirable for there to be physician consensus on the long-term medical risks of living kidney donation. Ongoing prospective cohort studies of donors and controls will better delineate such risks, improving consensus on what information should be disclosed.



   Acknowledgements
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
 Acknowledgements
References
 
We thank all the transplant professionals who participated in this survey. Grant support for this survey was provided by the Physicians Services Incorporated Foundation and the Canadian Institutes of Health Research (CIHR). A.X.G. was supported by a CIHR Clinician Scientist Award. A.Y. was supported by graduate scholarships from University of Western Ontario (UWO) and Lawson Health Research Institute (LHRI).

Conflict of interest statement. None declared.



   Notes
 
{dagger}Donor Nephrectomy Outcome Research (DONOR) Network Investigators: Neil Boudville, Laurence Chan, Mona Doshi, Amit Garg, Colin Geddes, Eric Gibney, John Gill, Martin Karpinski, Scott Klarenbach, Greg Knoll, Charmaine Lok, Mauricio Monroy-Cuadros, Norman Muirhead, Chirag Parikh, Emilio Poggio, G. V. Ramesh Prasad, Leroy Storsley, Sudha Tata and Darin Treleavan, Robert Yang Author contributions: Housawi, Thiessen-Philbrook, and Garg had full access to all of the data in the study and take responsibility for the accuracy of the data analysis. Study concept and design: Housawi, Boudville, Muirhead, Garg; Questionnaire development: Housawi, Boudville, Muirhead, Rehman, Garg; Acquisition of data: Housawi, Young, Boudville, Thiessen-Philbrook, Al-Obaidli, El-Triki, Garg; Analysis and interpretation of data: Housawi, Thiessen-Philbrook, Garg; Drafting of the manuscript: Housawi, Boudville, Rehman, Parikh, Garg; Critical revision of the manuscript for important intellectual content: Housawi, Young, Thiessen-Philbrook, Muirhead, Rehman, Parikh, Al-Obaidli, El-Triki, Garg; Statistical analysis: Thiessen-Philbrook, Garg; Obtained funding: Boudville, Muirhead, Garg; Administrative, technical, or material support: Garg; Study supervision: Garg. Back



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 Introduction
 Methods
 Results
 Discussion
 Acknowledgements
 References
 

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Received for publication: 10.10.06
Accepted in revised form: 20. 4.07


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