Abstract
Background Approximately 40% of the kidneys for transplant worldwide come from living donors. Despite advantages of living donor transplants, rates have stagnated in recent years. One possible barrier may be costs related to the transplant process that potential willing donors may incur for travel, parking, accommodation, and lost productivity.
Methods To better understand and quantify the financial costs incurred by living kidney donors, we conducted a prospective cohort study, recruiting 912 living kidney donors from 12 transplant centers across Canada between 2009 and 2014; 821 of them completed all or a portion of the costing survey. We report microcosted total, out-of-pocket, and lost productivity costs (in 2016 Canadian dollars) for living kidney donors from donor evaluation start to 3 months after donation. We examined costs according to (1) the donor’s relationship with their recipient, including spousal (donation to a partner), emotionally related nonspousal (friend, step-parent, in law), or genetically related; and (2) donation type (directed, paired kidney, or nondirected).
Results Living kidney donors incurred a median (75th percentile) of $1254 ($2589) in out-of-pocket costs and $0 ($1908) in lost productivity costs. On average, total costs were $2226 higher in spousal compared with emotionally related nonspousal donors (P=0.02) and $1664 higher in directed donors compared with nondirected donors (P<0.001). Total costs (out-of-pocket and lost productivity) exceeded $5500 for 205 (25%) donors.
Conclusions Our results can be used to inform strategies to minimize the financial burden of living donation, which may help improve the donation experience and increase the number of living donor kidney transplants.
Kidney transplantation is the preferred treatment for kidney failure. Recipients who receive a kidney from a living donor, compared with a deceased donor, spend less time on dialysis waiting for a transplant and are more likely to experience a longer life with better graft survival.1,2 Despite these advantages, the number of living donor kidney transplants per year in many countries has remained the same or declined over the last decade.3−5
Although living donors may vary according to their relationship to the donors, the evaluation process, surgery, and recovery remain similar. Living donor candidates are evaluated for their suitability in a process that involves multiple tests and visits to health professionals, and many donors incur costs for travel, parking, and lost productivity, including time off work. These costs occur in the context of a gift that improves the health of a patient with kidney failure and saves publically funded health care systems: every 100 kidney transplants saves the Canadian health care system approximately $20 million over 5 years from averted dialysis costs.6 Although some countries have programs that reimburse donors for certain financial losses, not all costs are reimbursed, and many prospective donors cite financial concerns as a top reason for not proceeding with donation.7−9 Given the outlay of money for travel, parking, and time off work (when applicable), financial costs may pose a barrier for potential willing donors and could be a contributing factor to stagnating rates of living kidney donation.9
Prior efforts to quantify the costs incurred by living kidney donors have been limited by small sample sizes, retrospective data collection, and incomplete cost data.8 Furthermore, some groups of donors may incur higher costs; for example, paired kidney donors may incur higher costs for travel, whereas spousal donors may incur higher costs for childcare (or other dependent care) when both parents are receiving medical attention. There is consensus within the transplant community that living kidney donation should not be a financial burden to donors.10 A detailed description of the financial costs incurred by living kidney donors can be used to develop or improve sound policies and programs across countries to reimburse legitimate expenses incurred by living donors across all subgroups. The information can also feature in donor informed consent and education. We conducted this study to better understand and quantify the financial costs incurred by living kidney donors.
Methods
Patient Involvement
The objectives of this study directly address a priority of living kidney donors and their recipients.9 Patients were not involved in the design or conduct of this study; however, the results of this study will be disseminated through existing and ongoing patient partnerships. Furthermore, our research group works closely with local organ procurement organizations and patient advocacy groups, such as the Kidney Foundation of Canada.
Design, Setting, and Participants
Data for this study were obtained from an ongoing multicenter prospective cohort study examining the medical, financial, and psychologic implications of living kidney donation. Participants (1042 living kidney donors and 400 healthy matched nondonors) were enrolled from 12 centers in Canada and five centers in Australia between 2004 and 2014. The results presented here are for the subset of 912 Canadian donors enrolled between 2009 and 2014 (results for the Australian donors are reported elsewhere11). The conduct and reporting of this study follow recommended guidelines (Supplemental Appendix A).12
All donors who participated in this study were approved by their local program for living kidney donation, were enrolled before donation, were 18 years of age or older, and could communicate in English or French. All participants provided written informed consent. Ethics approval was obtained from all participating centers (Western University’s Research Ethics Board Institutional Review Board approval number 6056).
Costing Methods and Measures
As summarized in Figure 1, we assessed costs incurred by donors using the microcosting approach of resource identification, measurement, and valuation. Major cost categories relevant to living kidney donors were identified through a systematic review of the literature,8 consultation with transplant health care professionals, and a prospective study of 100 Canadian living kidney donors.13 On the basis of this work, we designed a costing survey that captured the major types of costs incurred by living kidney donors: (1) out-of-pocket costs, including ground and air travel, parking, accommodation, and prescription medications, and (2) lost productivity costs, including lost wages (i.e., unpaid leave) and an inability to perform household activities or care for dependents.
Overview of microcosting methods used to determine out-of-pocket and lost productivity costs. API, application programming interfaces.
Data Collection
At study entry (before donation), participants underwent a physical examination and completed a standardized survey with questions on sociodemographic characteristics and health history. At 3 months, donors completed a mailed survey with questions on expenses incurred during the donor evaluation and perioperative period. The 3-month timeframe was chosen, because the accuracy of recalling information during this timeframe has an interclass coefficient >0.80.14,15 Additionally, most expenses related to donation occur within this timeframe.13 Multiple attempts were made to contact donors (by phone, mail, or email) about missing or discrepant data.
Resource Units and Valuation
We measured units of resources consumed and the cost per unit (e.g., distance traveled and cost per kilometer) to allow for comparisons across jurisdictions.16 Full details of the different resource units (travel, accommodation, medication, time, and productivity) and how they were measured are provided in Supplemental Appendix B. Briefly, resource units were assigned monetary values using conventional costing techniques and appropriate provincial or local rates and estimates (e.g., lost wages were estimated using provincial age- and sex-specific average wage rates,17,18 and ground travel was estimated using provincial kilometric rates19). For resources where no unit cost or rate was available (e.g., expenses associated with dependent care), donor-reported costs were used. All costs were standardized to the year 2016 (Canadian dollars) using inflation rates from Statistics Canada’s Consumer Price Index.20
Statistical Analyses
Total costs were summarized as means and SD as well as medians (25th, 75th percentiles). The primary analysis was restricted to donors with complete or partially complete costing data, where it was assumed that no costs (value of $0) were incurred if the costs or resource use for a given category were missing. A secondary analysis was done to include all donors (including donors missing all cost data) using full conditional specification multiple imputation models, generating 20 imputations to reduce sampling error.21 Missing data were imputed at the resource level rather than at the cost level (e.g., if no value was provided for number of ground trips, we imputed the number of ground trips rather than the total cost of ground travel). Diagnostics were assessed using the midiagplots command in Stata for efficient comparisons of the distributions.22 After these diagnostic tests for link function and family, we used a generalized linear model with a log link and γ-distribution to elicit adjusted comparisons of donor expenses between groups, a specification commonly used in health economic literature to model costs.
We conducted two prespecified analyses to examine whether costs varied according to whether donors knew their recipient (relationship type) or whether the donations were directed (donation type). Relationship-type donations were defined as spousal (donation to a partner), genetically related (sibling, parent, child, or genetically related relative), or emotionally related nonspousal (friend, step-parent, or in law). Donation-type donations were defined as directed (donation to a specified recipient), kidney paired (swap of kidneys in incompatible donor/recipient pairs), and nondirected (donors who were not known to the recipient, although they may have initiated a chain of paired donations). In an additional exploratory analyses, we examined whether costs varied across groups of donors defined by age (<35, 35–54, or 55 years of age and over), distance to the transplant evaluation center (<100 or ≥100 km), and employment status (employed, unemployed, retired, or other). We used multivariable regression models to compare out-of-pocket, lost productivity, and total costs in donor subgroups adjusting for age, sex, income, and transplant center (with the exception of the subgroups defined by age, where age was not an adjustment factor). We used models and distributions commonly used in health economic literature to analyze costs.23 We performed pairwise recycled predictions between referent and comparator groups to calculate the adjusted average marginal effects (as differences in costs between groups) along with their 95% confidence intervals and P values.
All analyses were conducted using Stata 14.2 (StataCorp LP, College Station, TX).24,25 Statistical tests were two tailed using a significance level of 0.05. The sample size enabled the upper and lower bounds of most 95% confidence intervals to span ≤$1000 (data not presented), indicating good precision for a range where the true parameter may be.
Results
Of the 912 donors enrolled in the study, all completed the predonation medical survey; 821 (90%) completed all or a portion of the 3-month costing survey (missing data are summarized in Supplemental Appendix C, Supplemental Table 1). Characteristics of the 821 donors are shown in Table 1 (all 912 donors are summarized in Supplemental Appendix C, Supplemental Table 2). Most donors were women (68%), white (88%), and married or living with a partner (79%). In 40% of donors, evaluations took place at a transplant center located >100 km from the donor’s home. Most donors knew their recipients: 386 (47%) were genetically related, 160 (19%) were emotionally related nonspousal, and 130 (16%) were spousal; the remainder donated as part of a kidney paired exchange (n=111 [14%]) or nondirected donation (n=34 [4%]). Donor characteristics were similar across groups, although 83% of spousal donors were women. Of the 669 (81%) donors who reported an annual household income, 159 (24%) had an income below $50,000, and 259 (39%) had an income above $100,000 Canadian dollars (for reference, the median Canadian household income in 2014 was $78,870).26
Demographic characteristics of 821 Canadian living kidney donors
Out-of-Pocket Costs
Out-of-pocket costs incurred by donors are summarized in Table 2. The most common out-of-pocket costs were for ground travel, parking, and postdonation prescription medication (analgesics or antibiotics), which were reported by 98% (804 donors), 88% (721 donors), and 77% (629 donors) of donors, respectively. The highest median costs (among donors who reported costs for a given category) were for nonhospital paid accommodation (median $746 [340 donors]), air travel (median $562 [173 donors]), and ground travel (median $405 [804 donors]). The median total out-of-pocket cost among all donors was $1254 ($531, $2589).
Out-of-pocket costs incurred by living kidney donors (2016 Canadian dollars) for 821 Canadian donors
Lost Donor Productivity Costs
Lost donor productivity costs are summarized in Table 3. A total of 634 donors were unable to work for a median of 35 days in the 3 months after donation. Of the 634 donors who were unable to work, 251 (40%) took unpaid time off work for a median of 30 days (the remaining 383 did not report unpaid time off work). The median lost income for the 251 donors who experienced unpaid time off work was $5534. Postsurgery, 650 (79%) donors reported being unable to perform household activities, and 415 (51%) indicated that they were unable to care for dependents, although median self-reported costs in each category were zero. The median total lost productivity cost among all donors was $0 ($0, $1908).
Lost donor productivity costs incurred by living kidney donors (2016 Canadian dollars) for 821 Canadian donors
Opportunity Costs
Of the 634 donors unable to work, 440 (69%) donors reported a median of 31 days of paid time off work. The median value of paid time off work was $6106 ($2503, $10,685) (Table 4). An alternate method of valuing lost home productivity using average wage rates for household activities and caring for dependents is presented in Table 4. Median costs of lost home productivity when valued at average wage rates were $3182 ($1894, $5940) and $2970 ($1705, $5724) for household activities and caring for dependents, respectively.
Opportunity costs of living kidney donors (2016 Canadian dollars)
Overall Financial Burden
The median total cost—out-of-pocket and lost productivity combined—was $2217 ($882, $5484). The maximum amount reimbursed to donors in most provinces in Canada through existing programs is $5500; total costs exceeded this amount in 25% of donors (n=205).
Subgroup Analyses
Comparisons between subgroups of donors are shown in Table 5. Total costs were higher in spousal compared with emotionally related (nonspousal) donors and directed compared with nondirected donors. Total costs did not differ significantly by age group; however, younger donors had significantly lower out-of-pocket costs and higher donor productivity losses, most likely due to a greater loss of income (Figure 2). Donors who lived farther from the transplant evaluation center (≥100 km) incurred higher out-of-pocket and total costs compared with those who lived closer. Employed donors had greater productivity losses compared with unemployed or retired donors.
Adjusted out-of-pocket, lost productivity, and total costs (2016 Canadian dollars; n=821) between subgroups of donors
The mean out-of-pocket and lost productivity costs incurred by donors stratified by age (2016 Canadian dollars).
Secondary Analysis
Similar results were obtained for all analyses when using multiple imputation to estimate missing values (Supplemental Appendix C, Supplemental Tables 3–5).
Discussion
To our knowledge, our study is the largest of its kind to rigorously capture data on the financial costs incurred by different types of living kidney donors. We found that donors experience significant financial loss throughout the donation process as represented by median (75th percentile) out-of-pocket, lost productivity, and total costs of $1254 ($2589), $0 ($1908), and $2217 ($5484), respectively. This adds to the growing body of evidence that many living donors experience significant financial loss due to donation. Of note, median total costs exceeded $1000 for nearly 75% of donors, $5500 for 25% of donors, and $10,000 for 13% of donors.
We also noted differences in costs borne by various groups of donors. Spousal donors incurred significantly higher costs than genetically or emotionally (nonspousal) related donors, possibly due to greater lost workforce productivity and/or the difficulty of caring for children or other dependents when both carers are receiving medical attention. Nondirected donors reported significantly lower lost productivity costs than directed or kidney paired donors; however, these donors also had the lowest median household income of all donor groups. Associations between household income and donor financial burden warrant additional exploration. The finding that kidney paired donors did not incur higher costs than other donors is reassuring for the continued success of Canada’s national program, which has enabled over 500 transplants since 2009.27 Kidney paired donors may need to travel farther and undergo additional testing that meets the donation criteria of all transplant centers participating in the national kidney paired donation program. One recent Canadian study identified that, of 51 kidney paired donors, all 51 underwent surgery in a different province from the one in which they were originally evaluated.28
Donor candidates may be withdrawing from the donation process due to concerns about financial burden from lost wages during the postoperative period.29 In our study, 25% of donors incurred costs that exceeded $5500, which is the reimbursement limit in many Canadian provinces. A recent report found that donors who perceived donation-related financial burden were less likely to have an income above the median in their residential area.30 In a separate study, candidates told family members and friends that they were willing to donate but that they were concerned about the potential lost income.31 Prior cost estimates vary, with median out-of-pocket costs ranging between $179 and $821 (not accounting for productivity losses).13,32 Other reports have highlighted the financial burden faced by living donors, with 18% reporting US $500 or more in nonmedical expenses.33
Current guidelines, recent consensus conferences, and strategic planning reports highlight the need to reduce financial disincentives to living donation or achieve financial neutrality, advocating for (1) a standardized, consistent system of reimbursement and legislation that protects employed donors and (2) the development of a financial toolkit for prospective donors.10,34−36 These initiatives require accurate data on the costs incurred by donors. However, donors are currently encouraged to use vacation days and/or sick time to reduce any lost income due to donation. This was reflected in our study, because 251 donors reported a median of 30 days off work without pay and 440 donors reported 31 days off with pay. Although current recommendations do not advocate accounting for home productivity costs, these opportunity costs do have an economic value. Although self-reported out-of-pocket costs borne by donors were relatively small, when a monetary value was assigned to the number of days unable to perform household activities or care for dependents at provincial wage rates, the additional median costs are $3182 and $2970, respectively.
In an exploratory analysis, we found significantly higher out-of-pocket costs for older donors, which likely reflect the need for additional testing and evaluation due to comorbidities compared with younger donors; indeed, older donors did take more trips to their transplant evaluation center, resulting in higher travel and accommodation costs. Conversely, younger donors were frequently employed and incurred higher lost workforce productivity costs (e.g., number of unpaid days off work) than older retired donors. Similar to previous studies, we found that donors who lived farther than 100 km from their transplant evaluation center incurred higher out-of-pocket costs than donors who lived closer, with no significant difference in productivity costs.32,37 Recognizing the effect of these nonmodifiable characteristics on out-of-pocket and lost productivity costs may help transplant programs better prepare potential donor candidates for the financial losses that they may encounter during donation.
This report has many strengths: a multicenter prospective cohort study design, 90% complete follow-up, rigorous statistical methods accounting for missing data, and appropriate regression models to analyze right-skewed cost data. Our cost-capturing instruments were informed by a pilot study using comprehensive and complete data collection methods.13 Our sample of donors, representing nearly 30% of all living kidney donors in Canada during our recruitment window,38 is the first to include donors participating in Canada’s kidney paired donation program, which began in 2009. There are some limitations to our study. All participants were from Canada, 88% were of white race, and 40% lived >100 km from their transplant evaluation center; these characteristics may affect the generalizability of our findings to other countries. We only considered costs related to the evaluation and up to 3 months after nephrectomy. We did not consider costs attributable to the development of any possible long-term complications from nephrectomy, and we did not consider total lost workforce productivity costs (costs to employer or other programs for lost wages, etc.). We did not include companion costs for travel, care, or other expenses in our analysis, which may be particularly relevant for donors who travel long distances to donate as part of the kidney paired donation; these costs would further increase the estimates of out-of-pocket costs for donors. Although we endeavored to limit self-reported costs, hospital discharge prescription drug coverage was not readily available, and thus, we relied on donor-reported costs. Because reporting of income was optional, data were only available for approximately 80% of donors, and as such, analyses adjusted for income were restricted to this group of donors. Income, however, was not found to be related to either out-of-pocket or lost productivity costs (data not shown). Finally, donor candidates who are evaluated but never donate can also encounter important financial consequences but were not included in this analysis.
In conclusion, many living kidney donors incur substantial costs associated with donation. These results characterize these costs and can be used to inform reimbursement strategies and programs, with the aim of identifying and assisting those at high risk of economic consequences. Removing financial disincentives to donation may increase the number of living kidney donor transplants and improve the donation experience for all types of donors. Future studies will explore other factors that may affect donor incurred costs, including, among others, geography and center differences.
DISCLOSURES
None.
Supplemental Material
Supplemental Appendix A. Checklist of recommendations for reporting of observational studies using Strengthening the Reporting of Observation Studies in Epidemiology (STROBE) guidelines.
Supplemental Appendix B. Supplemental methods.
Supplemental Appendix C. Supplemental tables and figures.
Supplemental Table 1. Pattern of missingness for costing variables.
Supplemental Table 2. Comparing demographic characteristics between donors with all or partially complete economic data and donors missing all economic data.
Supplemental Table 3. Out-of-pocket costs (2016 Canadian dollars) incurred by living donors: scenario analysis of multiple imputation for all donors (n=912).
Supplemental Table 4. Lost productivity costs (2016 Canadian dollars) incurred by living kidney donors: scenario analysis of multiple imputation for all donors (n=912).
Supplemental Table 5. Adjusted out-of-pocket, lost productivity, and total costs (2016 Canadian dollars) for all donors (n=912).
Acknowledgments
We thank Dr. Philip Jacobs for his advice and support. We thank members of the External Scientific Advisory Board (Dr. Stephen Walter, Dr. Sheldon Tobe, and the late Dr. David Sackett) for their oversight of the scientific integrity of the Donor Nephrectomy Outcomes Research Network prospective study. DONOR Network Investigators: Jennifer B. Arnold, Lianne Barnieh, Neil Boudville, Meaghan S. Cuerden, Christine Dipchand, Liane Feldman, Amit Garg, John S. Gill, Martin Karpinski, Scott Klarenbach, Greg A. Knoll, Charmaine E. Lok, Matthew Miller, Mauricio Monroy-Cuadros, Chris Nguan, GV Ramesh Prasad, Jessica M. Sontrop, Leroy Storsley, and Darin Treleaven.
Operating grant support was provided by the Canadian Institutes of Health Research (CIHR), which included partnership funding from Astellas for data collection. A.X.G. was supported by the Dr. Adam Linton Chair in Kidney Health Analytics and a Canadian Investigator Award from the CIHR. S.K. is supported by the Kidney Health Research Chair and the Division of Nephrology at the University of Alberta.
A.X.G. and S.K. affirm that the manuscript is an honest, accurate, and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as originally planned (and if relevant, registered) have been explained. All authors have completed the International Committee of Medical Journal Editors uniform disclosure form.
Footnotes
A.X.G. and S.K. contributed equally to this work.
Published online ahead of print. Publication date available at www.jasn.org.
See related editorial, “The Terrible Toll of the Kidney Shortage,” on pages 2775–2776.
This article contains supplemental material online at http://jasn.asnjournals.org/lookup/suppl/doi:10.1681/ASN.2018040398/-/DCSupplemental.
- Copyright © 2018 by the American Society of Nephrology
References
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