KIDNEY DONORS DONT REGRET: Follow-up of 370 Donors in Stockholm Since 19641

Fehrman-Ekholm, Ingela2 4; Brink, Bo2; Ericsson, Christina2; Elinder, Carl-Gustaf2; Dunér, Fredrik2; Lundgren, Göran3

Clinical Transplantation

Background. The aim of the study was to present the views of our kidney donors since 1964, at the time of donation, as well as later on—and to assess their current subjective health.

Methods. A total of 451 living-donor nephrectomies were performed on Swedish residents in Stockholm from April 1964 until the end of 1995. A questionnaire with 11 questions about the donation and a standardized health form (SF-36) were sent to all donors alive in 1997 (n=403).

Results. The mean age (±SD) of the donors was 61±14 years at follow-up and the time-since-donation was 12.5±7.7 years. The response rate was very good (92%). Current health, as assessed by form SF-36, was satisfactory. Donors scored somewhat better than those reported in a random sample of the Swedish population. The decision to donate had been easy: 86% made the decision themselves, without being pushed. Twenty-three percent thought that the nephrectomy had been troublesome. A higher percentage of young donors had felt that the postoperative period was difficult. Most donors (56%) stated that it had taken more than 2 months before they returned to a “normal” life, and 5% felt that they never completely recovered. Less than 1% of the donors regretted the donation. The commonest current medical prescription was antihypertensives (15%). The actual mean serum creatinine was 103±22 (range 48–219) μmol/L.

Conclusions. The results indicate that the degree of health is at least as high as in the general population. The decision to donate was easy for most of the donors, but surgery and the recovery period were troublesome and lasted longer than expected. Kidney function was acceptable.

Author Information

Departments of Renal Medicine and Transplantation Surgery, Karolinska Institute and Huddinge University Hospital, S-141 86 Huddinge, Sweden

2Department of Renal Medicine.

3Department of Transplantation Surgery.

Received 26 February 1999.

Accepted 17 September 1999.

4Address correspondence to: Ingela Fehrman-Ekholm, MD, Department of Renal Medicine, K56, Huddinge Hospital, 141 86 Huddinge, Sweden.

1Financial support for this project was obtained from Karolinska Institute and the Association of Kidney Diseased in Sweden.

Article Outline

In Stockholm, Sweden, we have used kidneys from living related donors whenever possible for two reasons: first, results of both graft and patient survival rates are better, and, second, too few kidneys are available for transplantation (1). In recent years, we, like others, have also accepted unrelated living donors, and the results have been excellent (2–4). A prerequisite for using living donors is that this does not impair the good health of the donor (5). However, in the choice of the donor, ethical issues must also be considered (6). A number of follow-up studies on living kidney donors have been done. Serious postoperative complications in kidney donors have been reported after 0.5–2% of the operations (7–9). Later follow-ups of the donor’s renal function have shown that the donation was acceptable, although 18–32% of them developed hypertension (10–12). In an earlier study, we compared survival of living kidney donors with what was expected, based on national Swedish health statistics for the whole population (13), and were reassured by the fact that the average survival rate of kidney donors was superior to what we expected. The reason for this better survival is probably that donors represent a selected group of healthy persons at the time of donation (14). One may, of course, speculate that the donors feel happier, have increased self-esteem as a result of the donation, and that this might have a beneficial effect on survival rate (15).

The aim of the present study was to assess the current subjective health state of living donors, using a standardized questionnaire (SF-36), and to obtain information about each donor’s recollection of feelings during and after the donation. To make our findings generally applicable, we strove to retrieve information from as many of the donors as possible.

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The material consists of all kidney donors (n=451) residing in Sweden who underwent nephrectomy for kidney donation in Stockholm from April 1964 until the end of 1995. Surgery had been performed via a left or right flank incision. None had a laparoscopic nephrectomy. They had medical check-ups within 2 months after surgery. Almost all of them were referred back to a nephrologist, internist, or a general practitioner by half-a-year to 1 year after the donation for subsequent follow-ups. These, however, were not usually made in a systematic way.

Forty-eight donors had died at the time of this follow-up (late 1997), but none of the deaths were related to the donation. The causes of death were cardiovascular disease (21), cancer–but none in the remnant kidney (14), suicide or injury (4), gastrointestinal disease (3), alcoholism (2), infectious disease (2), pulmonary disease (1), unspecified (one, dying abroad on vacation). Thus 403 persons were available for contact. Each living donor was mailed a letter explaining the objectives of the study and a 5-page questionnaire. The questionnaire had two parts: the SF-36 Health Survey Questionnaire (16, 17) and 11 questions in which we asked about experiences and views before and after the donation. The Swedish version of SF-36 is issued by the Health Care Research Unit at Sahlgrenska University Hospital in Gothenburg (18). The SF-36 measures health on eight different scales: physical functioning, physical role, bodily pain, general health perception, vitality, social functioning, role emotional, and, finally, mental health. A score is computed for each scale. The score ranges from 0 (least well-being) to 100 (greatest well-being). A random sample of 1257 subjects (690 women and 567 men) from the general Swedish population was used as a reference for the SF-36 score results. In the comparisons, adjustments were made for age and gender (C. Taft, personal communication). We also asked questions about more specific health problems and current medication. In the event of no response, the questionnaires were mailed up to three times. In addition to the questionnaires, the letter also contained a referral for a medical check-up with the nearest general practitioner, medical or kidney out-patient clinic. The medical check-up included measurements of blood pressure, weight, serum creatinine, and a urine analysis. The results of this check-up will be presented in detail elsewhere.

The local ethics committee at Huddinge Hospital approved the study.

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The average age (±SD) at donation of the 451 donors was 49.2±11(range 22–76) years. For those still alive in 1997 (n=403) the average age at donation was 48.4±11.3 years and their current age was 61.1±13 years. Ninety-two percent (370 of 403) answered the questionnaires. Of the responders, 80% answered after the first mailing, 12% after the second, and 8% after the third. Nine donors (2%) wrote that they did not want to participate, six donors (1%) had diseases (dementia, Alzheimer) which, according to their relatives, made them unable to answer and, finally, 18 (4%) did not reply at all. Of the 370 who answered the questionnaire, the average time since donation was 12.6±7.7 (range 2–34) years. Further characteristics of the donors are given in Table 1.

Our overall impression was that the donors were pleased to be approached by us. Slightly more than half of the donors (51%) reported that they were not regularly examined. Many had added letters and comments to the questionnaires. One comment was, “At last, someone is interested in us.”

According to the SF-36, the overall subjective health scores of the donors were satisfactory. In fact, donors on all eight health scales scored higher than the age- and gender-adjusted general Swedish population (Fig. 1).

Only a few of the donors (2.4%) reported having been ‘pushed’ to be a donor. Eleven percent answered that they had experienced a mixture of being pushed and wanting to donate, whereas most (86%) of them said that the decision to donate was their own (Table 2). Twenty-two percent remembered the postoperative period as troublesome, but 87% felt that they had been well taken care of on the ward (Table 2). Younger donors remembered the postoperative period as more complicated than the older donors did. More than 50% (54%) of those less than 30 years old recalled the postoperative period as troublesome, but this percentage had dropped to 9% among donors aged 60 or more (Fig. 2). Using multiple regression analysis, with degree of “troublesome” marked 0 or 1 as dependent variables, and age and “time-since-donation” as independent variables, we found that the experience of troublesome was significantly (P <0.001) related only to age, but not to time-since-donation. ANOVA, however, showed that there was a significant association not only between “troublesome” and age (P <0.001), but also for time-since-donation (P =0.01) and, in addition, there was a significant interaction between age and time-since-donation (P =0.02). Most of the donors said that it had taken a fairly long time until they achieved complete recovery after the donation; i.e., for 44%, it took 1–2 months and for 34%, between 3 and 4 months. Ten percent reported that complete recovery took more than 1 year and in 5% recovery had not yet occurred (Fig. 3).

At follow-up, 39% of the donors were taking medication regularly. Relatively more women (45%) than men were being treated (32%). Older donors were more frequently on medication, e.g., 56% of donors aged 70 years or more at the time of the investigation, but 23% below 40 years of age. The commonest prescription, antihypertensives, were used by 56 (15%) of the donors (19.8% men and 11.3% women).

The other medications used by donors were as follows: acetylsalicylic acid (as thrombosis prophylaxis), 31; diuretics, 26 (only 2 as sole medication); l-thyroxin, 24; bronchodilators, 14; anticoagulants (except acetylsalicylic acid), 12; allopurinol, 12; antidepressives, 10; gastrointestinal drugs, 9; digitalis, 9; antilipemic drugs, 8; nonsteroidal anti-inflammatory drugs, 6; paracetamol, 5; corticosteroids, 5; iron, 3; anti-epileptic drugs, 3; drugs against hypotension, 3; opioids, 2; cyclosporine (against rheumatic disease), 1; antineoplastic drug, 1. The medication suggest that the indications were, in the majority, cardiovascular disease, which also was the major cause of death among the donors. Diabetes seemed to have developed in six donors. Two had insulin, two both insulin and oral hypoglycemic drugs, and two oral hypoglycemic drugs only.

The medical investigation with analysis of serum creatinine is given in Figure 4. Serum creatinine above 200 μmol/L was found only in patients who were >80 years old.

Sixty-five percent of the donors said they were compensated for expenses and loss of income as a direct consequence of the donation; however, 27% were not sufficiently reimbursed, according to the questionnaire. The compensation was reported to have become better during recent years: 47% had been compensated during the 1960s, 59% during the 1970s and 1980s, and 79% during the 1990s.

Forty-one percent of the donors believed that the donation had had a significant impact on their life. Almost all of them felt that the donation affected their lives in a positive way. In many cases, the donors added comments like, “I am still happy 18 years later that I could help my son” or “The donation is one of the few things I am really proud of in my life.” However, there were also some negative comments, “I became depressed when the kidney stopped functioning.” To a difficult question whether the donor would have been willing to donate a kidney to a friend “if you had not donated to a relative,” 50% said yes, 12% no, and 37% were undecided.

Of particular interest was that only three (0.8%) of the donors regretted the donation, two were undecided (0.5%), and thus almost 99% reported that they did not regret their decision. In the five cases in which the donor had regretted the donation or was undecided, the transplantation had failed or the recipients had died shortly after surgery. In fact, at the time the donors received the questionnaire in the beginning of 1997, in all, 148 (33%) of the recipients had died, 32 (7%) were on dialysis, and 271 (60%) had a functioning graft. Additional results of the questionnaires are given in Table 2.

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The present study is unique in that 92% of the donors answered the questionnaire about the donation and daily life. Response frequencies of 50–60% have been noted by other studies (19, 20). We also received information from almost all donors who were still alive about their health, medication, and current renal function. Data on renal function, blood pressure, and urinary findings will be presented in detail elsewhere. The donors replied very quickly, most within 2 months. There was a feeling that the donors liked the attention and care. The health score analysis showed that the living-donors seemed to have stable health, and their scores were somewhat higher on all eight scales, compared with age-matched controls. This is important information. The donors represented an ageing population, the mean age being 61 years at the time of investigation. In our material, most donors were parents, and they were about 50 years old at the time of donation. An unexpected finding was that elderly donors experienced the postoperative period as less troublesome than the younger donors did (Fig. 2). This supports the use of older donors. One might argue that the donors had forgotten the pains and troubles, because more time had elapsed since donation. However, correction for time-since-donation did not change the difference. It has also been reported by others from Minnesota that younger donors experience more troubles and difficulties after the donation (19). We believe that young people do not “have time” to be in hospitals. They want to go home to their families and jobs as soon as possible, often before complete recovery. The donation becomes a negative stress factor. Therefore, we believe it is wise to use older donors, like spouses, who are often very motivated, and old parents, sometimes even grandparents, instead of young siblings or young parents (21–23).

Another unexpected observation was that the time for recovery after nephrectomy was long. As many as 5% stated they had never recovered completely, because of pain and discomfort from the scar. The introduction of laparoscopic techniques will probably eliminate this group and shorten postoperative convalescence time (24, 25).

Only a few of the donors had felt “pushed” to donate (Table 2). The great majority (86%) reported that they made the decision themselves. This is a considerably higher figure than that reported by Simmons et al. in 1971 (57%) or Smith et al. in 1986 (59%) (26, 27). However, in this study we had a higher percentage of parent donors than sibling donors, and this may, in part, explain the differences. Other have suggested that many donors had already decided to donate a kidney before they received any detailed information from the doctors, and they rarely changed their minds (28). This supports our finding that the donors make their decision early and by themselves. It is reassuring that very few regretted the donation (0.8%) and indicates that donation is accepted by donors in spite of painful surgery and long recovery time. The comments about improved self-esteem and happiness on several questionnaires also indicate that their decision to donate was correct and well-founded. The donors still believed they had done something good, although at the time of this survey around 40% of the recipients were dead or back on dialysis. Positive feelings of the donors have been pointed out by other reports (29). In fact, more anxiety was found in the non-donors in the family (20).

Concerning the private economy of the donors, there is a regulation or recommendation in Sweden that the donor should be compensated for loss of income during preoperative examinations, hospital stay, and convalescence. This view is usually shared by the social security insurance, the recipient’s county council area, and the donor’s employer. It is disappointing that not all donors were appropriately reimbursed for their expenses and loss of income, but satisfying that the reported percentage of donors who have been financially compensated had increased from less than 50% in the 1960s to almost 80% in the 1990s.

Regarding the often-discussed question as to whether hypertension is more common in kidney donors, we found that only 15% of the donors had hypertension or were being treated for hypertension. As will be shown in another report, based on the detailed medical check-up of the donors, the age-adjusted prevalence of hypertension was not higher among donors than in the general population—indeed, it was lower. This is probably due to the fact that the donors represent a selected group of healthy persons with normal blood pressure and normal renal function before donation. It is very important to adhere to this policy (30). Otherwise, there is a risk of accepting donors with early slowly emerging renal disease that will perhaps end in chronic renal failure.

Concerning the other medications, the most common drugs were acetylsalicylic acid in thrombosis dosage and diuretics, indicating cardiovascular disease in an aging population. Somewhat unexpectedly, l-thyroxin treatment had 6.5%, which is higher than the expected 2–3% among the elderly. It should be added that hypothyreosis is a disease that is often undiagnosed. Diabetes type I was found in one donor and type II in five donors, indicating that the donors had been selected. Antidepressives were used by 2.7%, which is one-third of the reported treatment in the elderly.

Should the kidney donors undergo regular check-ups after the donation? There are two phases for such donors: the first is the initial postoperative recovery phase of about 1 year, and then the rest of the donor’s life. The long convalescence clearly indicates that the donor should be examined often by the surgeon or nephrologist in the first years after the donation. Only 63% of the donors thought that repeated medical check-ups were sufficient (Table 2). In view of the truly philanthropic and altruistic acts by such donors, we believe that they could be well looked after for the rest of their life, although their health in general may remain good.

In summary, our findings support the continuing practice of using related and unrelated living subjects as kidney donors. Long-term follow-ups of the donor’s health do not give any increased evidence of disease or disability. Less than 1% of the donors in this series regretted the donation. Nevertheless, several donors experienced the first few months after the donation as troublesome. Older persons had fewer problems after donation. Strict rules for accepting living-donors should be maintained and followed to ensure that the good experiences which we report here do not become flawed.

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