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Reports on quality of life of kidney donors include small populations with variable response rates. The aim was to evaluate quality of life in kidney donors in a large cross-sectional study. Through the Norwegian Renal Registry we contacted all 1984 kidney donors in the period 1963–2007 with a response rate of 76%. All received the Short-Form-36 (SF - 36) survey form and a questionnaire specifically designed for kidney donors. SF - 36 scores for a subgroup (n = 1414) of kidney donors were not inferior to a general population sample, adjusted for age, gender and education. When asked to reconsider, a majority stated that they still would have consented to donate. Risk factors for having doubts were graft loss in the recipient (OR 3.1, p < 0.001), medical problems after donation (OR 3.7, p < 0.001), unrelated donor (OR 2.2, p = 0.01) and less than 12 years since donation (OR 1.8, p = 0.04). Older age at donation was associated with lower risk (OR 0.98, p = 0.03). Compared with other donors, those expressing doubts had inferior SF - 36 scores. Norwegian kidney donors are mostly first-degree relatives. They are fully reimbursed and offered life-long follow-up. All inhabitants are provided universal healthcare. This should be considered when extrapolating these results to other countries.
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Living kidney donation is a morally complex situation. The donor endures short- and long-term health risks without any health benefits. Evaluating quality of life in previous donors is important for guiding informed consent in prospective donors. In Norway, a large proportion of kidney transplants are from living donors. Since 1963 we have had an active living donor policy (1). Donors are fully reimbursed and offered free life-long medical follow-up from their local nephrologist. A previous report on long-term survival, including most of the donors in the current sample, found superior long-term survival compared with the general Norwegian population (2), suggesting that the selection before donation is adequate. Follow-up information is registered in a donor registry. This active donor policy has contributed to a stable waiting list.
Previous studies have demonstrated good quality of life, and little regret among previous donors (3). These findings were also evident in a study on Norwegian donors (1). However, most studies include small donor populations, response rates are quite variable, and information on nonrespondents is frequently lacking (3).
Since we had available contact information on all previous Norwegian kidney donors, we wanted to perform a large cross-sectional study with the aim of evaluating quality of life after donation. Based on a standardized questionnaire we wanted to compare the donors with a general population sample. Furthermore, we wanted assurance that the findings from previous Norwegian studies were still relevant (1,4).
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Through the Norwegian Renal Registry we obtained contact information for all kidney donors donating in the period 1963–2007, and who were still alive. During October 2008, questionnaires were sent out by mail. Sixteen donors were living abroad. We also contacted these, but are not certain if nonrespondents received the questionnaire, as mail would not necessarily be returned to sender from these countries. Donors who did not respond were sent a maximum of two reminders during the following year. Responses were registered until March 2010.
All donors received the Short-Form-36 (SF - 36) survey form (5) in the Norwegian version 1.2 (6). This form has been used in several previous studies on quality of life in kidney donors (3). In addition, a questionnaire containing 47 items, based on a previous Norwegian study (1), was distributed. These questions were constructed specifically for previous kidney donors, including a question that has been used in several earlier publications: ‘If you had the chance to reconsider, would you consent to donate your kidney again?’ (3).
SF - 36 was recoded and the answers aggregated to construct eight scales ranging 0–100, and two component summary scales standardized for comparison with a US general population with a mean score of 50 and standard deviation of 10 (5). A large, unselected, noninstitutionalized population sample aged 16–80 years from Akershus county in Norway, was used as a control group (7), also using the Norwegian version 1.2 of the SF - 36. Due to lack of individuals over 80 years of age in the control group, and below 24 years of age in the group of previous donors, we restricted our analyses to individuals between 24 and 80 years of age. We also compared our control group stratified for age and gender with previously published normative SF - 36 data on the general Norwegian population (6). Though our control group performed slightly better, this was not of any clinical significance. Consequently, despite being from a single county, we consider our control group to be representative of Norway at large. When comparing scores across scales and component summary scales, adjustments were made for level of education (more or less than 4 years of education after college), gender (male/female), and age.
In response to the question: ‘If you had the chance to reconsider, would you consent to donate your kidney again?’, there were five possible responses ‘definitely’, ‘probably’, ‘don't know’, ‘probably not’ and ‘definitely not’. The last three alternatives were combined into an outcome variable for multiple logistic regression analysis to examine risk factors for having varying degrees of doubt concerning the previous kidney donation. Potential explanatory variables were entered into the regression analysis based on previous studies and clinical experience. Time since donation was non-normally distributed, and was transformed into a categoric variable by dividing it at the median value.
Descriptive and regression analyses were performed using SPSS version 16.
The study was approved by the regional ethics committee, and all participants signed a consent form.
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Out of 2269 kidney donors donating in the period 1963–2007, 1984 were still alive. Of these, 1508 responded, a response rate of 76%. Nonrespondents were similar to respondents in terms of mean age at donation (46.0 vs. 46.1 years, p = 0.9), proportion of males (42.3% vs. 39.5%, p = 0.3) and proportion of first-degree relatives as recipients (81.6% vs. 79.9%, p = 0.4). However, median time since donation was longer for nonrespondents (15.2 vs.12.6 years, p < 0.001).
Predonation data are shown in Table 1. Donors differed in respect to who first approached them for donation. Many donors (47.9%) offered their kidney for donation voluntarily without anyone asking first, others were approached by the recipient (15.4%), another family member (6.6%) or the recipient's physician (27.1%). Information regarding donation was mostly obtained from the local nephrologist (74.1%). Written information was received by 792 (52.5%) donors, and 690 of these rated the information as ‘good’. Pressure from family, friends or health professionals was experienced by a total 11.7% of donors. Some experienced pressure to donate from family members (5%), friends (0.8%) and hospital employees (2.1%). Pressure not to donate (family members; 5%, friends; 2.6%, hospital empoyees; 0.7%) was also described (several responses were allowed).
Table 1. Predonation data
|Age at donation (SD)||1508||46.1 (11.7)|
|Male gender (%)||1508||596 (39.5)|
|Recipient (%)||1483||Father 96 (6.5), mother 57 (3.8), son 261 (17.6), daughter 175 (11.8), brother 406 (27.4), sister 187 (12.6), spouse 202 (13.6), friend 14 (0.9), other 85 (5.7)|
|Level of education (%)||1480||High school 867 (58.6), college 131 (8.9), university <4 years 197 (13.3), university >4 years 214 (14.5), other 71(4.8)|
|Employment status before donation (%)||1497||Full-time 1043 (69.7) Part-time 257 (17.2) None 197 (13.2)|
|Were you the first one asked to donate a kidney? (%)||1443||Yes 1031 (71.4) No 300 (20.8) Don't know 112 (7.8)|
|Did you feel any pressure* from family, friends or health professionals? (%)||1508||Yes (11.7), no (88.3)|
After donation (Table 2), 168 (11.5%) donors reported medical problems. Regarding the type of problem, several conditions were described. Hypertension was reported by 47 donors, some degree of reduced renal function by fifteen donors, ischemic heart disease by seven, and new-onset diabetes by three. One hundred and eighty-three (12.1%) donors reported being less physically active than before donation, painkiller use the last month was reported as ‘daily’ in 5% of donors, and ‘weekly’ in 8%. Correspondingly, use of tranquilizers was 7.2% and 3.1%.
Table 2. Postdonation data
|Median time since donation* (range)||1508||12.7 (1.1–42.9)|
|Does the donated kidney still function? (%)||1443||Yes 911 (63.1), no 524 (36.3), don't know 8 (0.6)|
|Has donating a kidney lead to conflicts with your friends or family? (%)||1504||No 1423 (94.6) yes; some 70 (4.7), yes; considerably 11 (0.7)|
|Do you feel that a dependent relationship has developed between you and the recipient (%)||1464||Don't know 46 (3.1), no 1131 (77.3), possibly 203 (13.9) yes 84 (5.7)|
|Have you experienced any medical condition caused by kidney donation? (%)||1464||Yes 168 (11.5), no 1296 (88.5)|
|Has kidney donation been detrimental to your health? (%)||1493||No 1391 (93.2), yes; some 90 (6.0), yes; very 12 (0.8)|
|Have you received follow-up from your local nephrologist (%)||1490||Yes 1125 (75.5), no 365 (24.5)|
|Do you smoke daily? (%)||1500||Yes 348 (23.2), no 1152 (76.8)|
|Have you had personal expenses in relation to donating a kidney? (%)||1475||Yes 244 (16.5), no 1231 (83.5)|
|Have you experienced increased insurance premiums as a consequence of kidney donation? (%)||1146||Yes 13 (1.1), no 1133 (98.9)|
|How much time did it take before you could return to full-time work? (range)||1502||8.8 weeks (0–440 weeks)|
|Employment status at time of survey (%)||1492||Full-time 663 (44.4), part-time 212 (14.2), no 617 (41.4)|
|If currently employed, has donating a kidney affected your career? (%)||1005||Yes 31 (3.1), no 927 (92.2), don't know 47 (4.7)|
|If you had the chance to reconsider, would you consent to donating your kidney again? (%)||1501||Definitely 1211 (80.7), probably 209 (13.9), don't know 34 (2.3), probably not 27 (1.8), definitely not 20 (1.3)|
Two hundred and fifty-three donors reported having applied for life insurance, of these 34 encountered difficulties due to previously having donated a kidney. Thirteen donors reported increased insurance premiums as a consequence of donation. A total of 10.7% of donors experienced kidney donation as an economic burden.
Scores on the eight scales and the two component summary scales of the SF - 36 are shown in Table 3. In total, 1414 previous kidney donors and 6800 controls between 24 and 80 years of age were available for analysis. After adjusting for age, gender and level of education, previous kidney donors showed significantly better scores on all eight scales and both component summary scales.
Table 3. Short Form-36 (SF - 36) quality of life scores in kidney donors and controls
|Health status scales||Kidney donors (n = 1414)||Controls (n = 6800)||p-Value*|
|Physical function||89.3 ( 17.5)||87.5 ( 18.7)||<0.001|
|Role physical||82.9 ( 34.0)||80.4 ( 35.2)||<0.001|
|Bodily pain||78.5 ( 26.1)||74.3 ( 26.8)||<0.001|
|General health||81.1 ( 21.0)||76.8 ( 21.6)||<0.001|
|Vitality||64.5 ( 21.1)||62.0 ( 21.0)||<0.001|
|Social function||89.7 ( 19.5)||88.1 ( 20.2)||<0.001|
|Role emotional||89.9 ( 26.8)||87.8 ( 28.2)||<0.001|
|Mental health||83.6 ( 15.1)||81.4 ( 15.4)||<0.001|
|Physical component summary scale||51.3 ( 9.5)||50.1 ( 9.9)||<0.001|
|Mental component summary scale||54.0 ( 8.4)||53.1 ( 9.0)||<0.046|
When asked to reconsider, a majority stated that they would ‘definitely’ (80.7%) or ‘probably’ (13.9%) consent to donate again. The subgroup of donors who expressed varying degrees of doubt regarding previous donation had lower SF - 36 scores than other donors (physical function 80.9 ± 24.3, role physical 68.9 ± 42.6, bodily pain 64.5 ± 30.6, general health 62.8 ± 27.6, vitality 48.5 ± 25.6, social function 73.8 ± 29.9, role emotional 73.7 ± 41.4, mental health 70.5 ± 22.1, MCS 46.3 ±13.2 and PCS 48.7 +11.8). By adjusted analyses, doubt regarding previous donation was significantly associated with all eights scales and both component summaries.
Regarding risk factors for having varying degrees of doubt (Table 4), increased risks were observed for donors with a recipient whose graft had been lost (OR 3.1, p < 0.001), donors who reported medical problems as a consequence of donation (OR 3.7, p < 0.001), unrelated donors (OR 2.2, p = 0.01) and in those who had donated less than 12 years ago (OR 1.8, p = 0.04). Decreased risk was observed with older age at donation (OR 0.98, p = 0.03). Level of education, employment status at time of donation and minimally invasive surgery were tested but due to multivariate nonsignificance and lack of impact on other variables, they were not included in the final model.
Table 4. Risk factors* for having varying degrees of doubt about previous kidney donation (n = 71/1377)
|Risk factor||Unadjusted||95% CI||Adjusted||95% CI||p-Value|
|odds ratio||Lower||Upper||odds ratio||Lower||Upper|
|Age at donation||0.98||0.96||1.00||0.98||0.95||1.00||0.03|
|<12 years since donation||1.1||0.7||1.8||1.8||1.0||3.2||0.04|
|Medical problems after donation||4.3||2.6||7.2||3.7||2.2||6.4||<0.001 |
|Graft loss||2.3||1.4||3.6||3.1||1.8||5.2||<0.001 |
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Previous donors reported significantly better quality of life than the general population on all scales of the SF - 36. Due to the small size of the difference we considered the results as clinically similar. When asked to reconsider, a large majority of donors stated that they would have consented to donation again. However, certain subgroups seemed more likely to express doubts about their previous donation.
Several earlier studies have reported significantly better SF - 36 scores in kidney donors when compared with a control group (8–11). Some smaller prospective studies have shown a decrease in SF - 36 scores after donation, suggesting a negative impact of donation (12–14). Accordingly, these studies imply that donors, when compared to a control group, may have superior SF - 36 after donation because they are strictly selected, and not as a consequence of kidney donation. When conducting SF - 36 immediately postdonation, an initial decline in quality of life scores during the postoperative period is expected due to the consequences of surgery (4,12). SF - 36 scores at later time-points have been shown to return toward preoperative levels (4). We are not aware of any study showing prospectively that SF - 36 scores increase after kidney donation compared with predonation values.
A large majority of donors were willing to donate again, a common finding in several studies (3,9,10,15,16), and also in accordance with a report on living liver donors (17). Our result was also similar to a previous study on the same population (1).
Any donor expressing doubts concerning previous kidney donation is a serious issue. Several authors have assessed risk factors for this outcome. As in the previous studies (9,15,16), we demonstrated increased risk in those experiencing medical problems after donation. We also found increased risk in donors whose recipient experienced graft failure. A study by Smith et al. (16) did not find this association. However, recipient death has been associated with increased risk of regretting donation (9), relevant to our finding. Furthermore, we found increased risk in unrelated donors. Some have demonstrated relatives other than first grade to be at increased risk (9), others have pointed out the importance of predonation conflicts with the recipient (15). As most of our unrelated donors were spouses, a possible association between donation and increased marital stress in a previous study (16) may be of relevance. Spouses should not be eliminated as potential donors, but might profit by performing a thorough evaluation regarding expectations and motivation.
Those expressing doubts in relation to the previous donation had significantly lower SF - 36 scores. We are not aware of any previous reports of this association. Although we cannot differentiate whether this relationship is causal or based on a mutual confounder, this is an important finding, since it suggests a potentially large impact on donor quality of life.
The proportion of donors experiencing pressure in relation to donation was comparable to previous studies (15,16). Donating due to external pressure is considered a high-risk motive, in the sense that it may negatively affect psychosocial donor outcome (18).
In our study, 16.5% reported personal expenses and 10.7% described donation as an economic burden. These results are substantiated by the previous studies (8–10,15,16,19). However, since all Norwegian donors are offered full governmental reimbursement, one would expect the proportion in our study to be even less.
Only a small proportion of our respondents applied for life insurance. However, more than 10% of these encountered difficulties. We do not know if these difficulties were due to unfamiliarity with previous kidney donors, rather than unwillingness to provide insurance.
Kidney donors have gone through a unique experience which is not possible to undo. Thus, some may find it hard to express negative feelings in relation to the donation process. Furthermore, the questionnaires were not anonymous, and donors were to return them to the transplant center. Since previous donors over 80 years of age were excluded from the comparison, our findings may not be valid for this group.
We had no measure of quality of life before donation. Consequently, we had no means of detecting smaller decrements in quality of life following donation. Also, the use of a general population sample as a control group may further decrease detection rate since kidney donors are a highly selected group of motivated and healthy individuals. Norwegian kidney donors are mostly first-degree relatives. They are fully reimbursed and offered life-long follow-up. In Norway, all inhabitants are provided universal healthcare. This should be considered when extrapolating these results to other countries.
The present study is the largest study to date on quality of life after kidney donation. The response rate was acceptable and we had access to demographic data on nonrespondents. The main findings are reassuring for future donors. Previous donors scored significantly better than a general population sample on all eight subscales of the SF - 36 after adjustment for confounders. Furthermore, SF - 36 results have been shown to be comparable between Norway, several European countries, and the United States (20). More importantly, when asked to reconsider, a large majority of donors stated that they would have consented to donation again. Overall, the findings of this study support our current donor policy.