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Analysis & Commentary

Donors Need Support Too

Fehrman-Ekholm, Ingela1,3; Tydén, Gunnar2

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doi: 10.1097/01.TP.0000133306.59018.E3
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During the last few decades there has been a steady increase in the use of living donors for kidney transplantation. Today, not only family members (including spouses) but also more distant relatives, friends, and even anonymous donors become live donors. Most studies have focused on the incidence of hypertension and proteinuria or kidney function after donor nephrectomy. However, knowledge about psychosocial consequences of donating an organ is also important.

Some types of complications such as long-term pain and depression may prolong sick leave and even result in loss of work. Economic losses during hospitalization and investigations, and the outcome of the transplantation are factors that could affect the donor’s social life. Questionnaires for assessing quality of life are a commonly used instrument for analyzing the psychosocial status of individuals. The standardized questionnaire makes it possible to compare different groups of patients. The Short Form-36 questionnaire also has been used in recent studies of living donors.

It is striking that the donors’ quality of life is reported to be better than or equivalent to that of controls in the published data (1–4). This suggests that donors have a certain personality with high self-esteem and that the donation procedure increases these positive traits (5). However, among the donors we also find people who regret the procedure. This can be seen in 1% to 5% of donors and is usually linked to bad outcome of the transplantation or chronic pain from the nephrectomy scar or elsewhere. The worst scenario for donors seems to be death of the recipient within the first year. Also, early graft losses cause depression in the donor. Chronic pain in and around the scar, which has been reported mainly by donors with flank incisions, causes discomfort and regret because there really is not a good cure. Diffuse pain like fibromyalgia pain has also been reported in some donors.

Economic losses resulting from loss of income during hospitalization often do not involve great sums, but they do create irritation and stress. It is an outrage that a donor, who saves society an average of approximately $1 million, cannot be compensated for such loss of income. Other causes of stress are failure to call donors for regular check-ups and doctors differing in their opinions or changing their minds about the necessity of check-ups. And even if happiness and positive feelings are more common traits, anxiety about the recipient also exists among some donors. It is interesting that elderly people experience the donation as less stressful than do young people. It is therefore advisable to accept the older donor first.

In the article by Giessing et al in this issue of Transplantation(6), it is suggested that psychosocial check-ups should be introduced for the donor. We are aware that some donors need support after the procedure, but most donors return to a normal life. However, providing psychosocial check-ups would convey the message that the health care system cares for the donors, not only before the donation but also afterward.

Moreover, we think that the choice of donors is of utmost importance. Not all people who want to donate an organ and who are suggested by the recipients can be donors. The medical investigation programs are important, and a prospective donor should have several visits with the practitioner before the donation to feel safe about the task to donate. Also, it is important to find psychologic instruments that can give us proper support in advising potential donors about whether to donate. Such instruments could also be helpful if complications occur after the donation. It seems that approximately 5% of donors have long-term psychologic problems, which is probably lower than in the general population. Surgical trauma and the result of the transplantation are extremely important for the donor. With the new type of donor who is not a family member, there may be more, or fewer, psychosocial problems. We therefore need to continuously obtain information about our living donors. An interactive follow-up with generous support is always a good idea because the donors are often the “silent heroes.” Fortunately, however, donors generally have a long life ahead of them.

REFERENCES

1. Westlie L, Fauchald P, Talseth T, et al. Quality of life in Norwegian kidney donors. Nephrol Dial Transplant 1993; 8: 1146.
2. Johnson E, Anderson J, Jacobs C, et al. Long-term follow-up of living kidney donors: quality of life after donation. Transplantation 1999; 67: 717.
3. Fehrman-Ekholm I, Brink B, Ericsson C, et al. Kidney donors don’t regret. Follow-up of 370 donors in Stockholm since 1964. Transplantation 2000; 69: 2067.
4. Isotani S, Fujisawa M, Ichikawa Y, et al. Quality of life of living kidney donors: the short-form 36-item health questionnaire survey. Urology 2002; 60: 558.
5. Simmons RG, Klein SD, Simmons RL. Gift of life: the social and psychological impact of organ transplantation. New York, NY: Wiley 1977.
6. Giessing M, Reuter S, Schönberger B, et al. Quality of life of living kidney donors in Germany: a survey with the Validated Short Form-36 and Giessen Subjective Complaints List-24 Questionnaires. Transplantation 2004; 78: 864.
© 2004 Lippincott Williams & Wilkins, Inc.