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Limitation in selection of donors in a living-related renal transplant programme
Limitation in Selection of Donors in a Living-Related Renal Transplant Programme S.A.A. Naqvi, F. Mazhar, R. Ahmed, H. Jamal, R. Zaidi, and A. Rizvi
T
HE INCIDENCE of end-stage renal disease (ESRD) in Pakistan is estimated to be over 100 new patients per million population (pmp), but, due to limitations of dialysis facilities, only about a quarter of these patients have access to dialysis. Moreover, the transplantation rate for kidneys is less than 5 pmp yearly. Cadaver organ donation has not yet been accepted by society and legislators. A major reason for this is lack of awareness and knowledge about the need and benefits of transplantation in the community. SIUT, the largest public sector dialysis and renal transplantation facility, registered 1009 new renal failure patients in 1997. Of these, 209 had acute renal failure, while 800 had ESRD, out of which 364 patients in the chronic dialysis programme were considered as prospective transplant candidates. Of these, 97 were transplanted, while 86 had significant medical and social problems with the family donors thus excluding them from receiving a renal transplant. The aim of this study was to identify the problems in selecting suitable donors in a living-related transplant programme. Furthermore, the study compared the medical and social problems in donors in two 5-year periods (ie, 1988 to 1992 [historical] and 1993 to 1997 [current]).
SUBJECTS AND METHODS Between 1988 and 1992 (historical group), 167 recipients received an intrafamilial donor kidney transplant. In the same period, 120 potential recipients could not be transplanted due to problems with donors. In the 5-year period from 1993 to 1997 (current group), 365 recipients were transplanted, while 300 prospective recipients were excluded from receiving transplantation due to problems with their family donors. In the historical group, 784 prospective donors were evaluated. Of these, 353 were excluded due to extremes of age and blood group incompatibility. Similarly, in the current group, 1831 potential donors were studied. Of these, 789 were not considered for further evaluation on similar grounds. Seventy-nine unmarried females in the historical group and 158 in the current group had to be excluded on protocol when we discovered very early in our transplant programme that unmarried female donors were not able to get married after donating a kidney, because loss of a kidney was perceived as a life-long disability.
Fig 1. Problems in prospective donors. Gray bars: historical (n 5 352); white bars: current (n 5 884).
RESULTS
The prospective family donor pool was remarkably similar in both groups. The ratio of recipient:donor was around 1:6 in the historical and current groups. Medical problems in intrafamilial donors was 38.3% in the historical group and 24.6% in the current group. Hypertension was the most common medical problem, seen in 17.3% of donors in the historical and 10.9% in the current group. Urologic problems were seen in 8.5% of the donors in the historical group and 4.5% in the current group, with stone disease being the most common condition in both groups. Diabetes mellitus was seen in 6.8% of the donors in the historical group and 4.9% in the current group. Analysis of the social reasons for declining to be a donor From the Sindh Institute of Urology and Transplantation (SIUT), Dow Medical College, Karachi, Pakistan. Address reprint requests to Dr S.A.A. Naqvi, Sindh Institute of Urology and Transplantation (SIUT), Dow Medical College, Karachi, Pakistan.
0041-1345/98/$19.00 PII S0041-1345(98)00623-X
© 1998 by Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010
2286
Transplantation Proceedings, 30, 2286–2288 (1998)
DONOR SELECTION IN LIVING-RELATED TX
Fig 2. Refusal to donate due to social reasons. Gray bars: historical (n 5 352); White bars: current (n 5 884).
revealed similarity in the occurrence of different problems (Fig 1). The most common reason for refusal by the family was because the donor was the “breadwinner” in 9.1% of the historical and 12.1% of the current group (Fig 2). Intervention of in-laws and parents was the next common reason for refusal, seen in 11.1% of historical donors and 13.4% of current donors. Unwillingness among the donors themselves was another important reason for refusal to donate. Perceived life-long disability following nephrectomy was found to be the most common reason seen in a disproportionately high 25.7% of the current group, compared with 4.3% in the historical group. Fear of impotence in males and sterility in females after loss of a kidney was an important consideration. Interestingly, the gender distribution of medical problems was comparable although hypertension was more frequently seen in females, while diabetes mellitus was more commonly seen in males. However, in the category of social problems leading to refusal to donate males were predominant in all aspects, including unwillingness to donate due to perceived life-long disability. DISCUSSION
The structure of Pakistani society is predominantly feudal and tribal in rural areas of the country where two thirds of the people reside. It was therefore expected that, in communities where large families live in a joint family system, often in the same household under the patronage of the family elder, donating an organ to one’s own family member should not pose difficulty. The demonstration by the family of bringing forward an average of six prospective donors for one recipient is a testimony to close family relations. However, fear of surgery and family circumstances often caused the advantage to be dissipated.
2287
One important lesson learned from the experience of the living-related donor transplant programme at SIUT is that unmarried females should be considered for donation as a last resort. Generally marriages are arranged by the family and females who donate a kidney encounter great difficulty in finding a partner in marriage. Uninephrectomy has become a distinct stigma and is perceived by the community to render the female disabled and unfit to carry out the family obligations of bearing children and looking after the household. Social problems encountered in the study were very revealing and appeared culture-specific. The tendency of families of withholding the “breadwinner” from becoming a donor was based on the concept of disability. The majority of donors came from a poorer socioeconomic background with fragile family earnings. Absence from work in a society where social security is nonexistent was seen by the families as a big risk. Moreover, if the prospective donor was involved in manual work, loss of a kidney was looked upon as negative from the standpoint of labor fitness. Similarly, parents and in-laws kept their children away from donating because of the fear that donation would make the person unfit for work, adding to financial difficulties in the future. Again, disability was the underlying factor in unwillingness to donate a kidney in prospective donors who thought that donation would make them permanently weak and infirm. The weakness or disability was perceived as permanent. In some there was apprehension that donation would make them prone to renal failure, because the missing kidney would put more stress on the remaining one. The present study revealed that males accounted for the majority of persons refusing to donate in the social problems groups (ie, “breadwinner,” parental and in-law intervention, as well as the category of unwillingness by the prospective donors themselves). The fact that females were more willing to donate may not be truly representative. In our male-dominated society, where women lack empowerment, donation by the female is often the result of family pressures. In one study, social scientists in Pakistan documented that, in terms of adult literacy, education, and earning opportunities, women lag far behind their male counterparts.1 In our culture, women are expected to offer themselves for sacrifice for males who happen to be in an advantageous position because of their earning capability. Finally, the revelation about medical conditions in supposedly healthy donors is problematic. More than one third of the donors had medical problems hitherto not known to them. This underlines the lack of health awareness among the population. Health checks are indicated because of the high prevalence of donor medical problems. Hypertension, stone disease, diabetes mellitus, ischemic heart disease, and hepatitis were frequently diagnosed. A public education campaign highlighting the measures of keeping healthy should be promoted and warning signs of common diseases need to be publicized in the press and television so as to encourage people to seek diagnosis of their underlying ailments.
2288
CONCLUSIONS
In view of high costs and the limited dialysis centres in our country transplantation activity needs to be increased. Transplantation success is likely to increase awareness in the community. However, despite a sizeable donor pool in a living-related programme several limitations are seen due to medical and social reasons. Moreover, health awareness is necessary for earlier detection of medical problems in
NAQVI, MAZHAR, AHMED ET AL
supposedly “healthy” family donors. Family education is essential to overcome the fears of disability arising from donation of organs.
REFERENCES 1. Haq M: Country Profile, in Human Development in South Asia 1997. Oxford: Oxford University Press; 1997, p 41
T
HE INCIDENCE of end-stage renal disease (ESRD) in Pakistan is estimated to be over 100 new patients per million population (pmp), but, due to limitations of dialysis facilities, only about a quarter of these patients have access to dialysis. Moreover, the transplantation rate for kidneys is less than 5 pmp yearly. Cadaver organ donation has not yet been accepted by society and legislators. A major reason for this is lack of awareness and knowledge about the need and benefits of transplantation in the community. SIUT, the largest public sector dialysis and renal transplantation facility, registered 1009 new renal failure patients in 1997. Of these, 209 had acute renal failure, while 800 had ESRD, out of which 364 patients in the chronic dialysis programme were considered as prospective transplant candidates. Of these, 97 were transplanted, while 86 had significant medical and social problems with the family donors thus excluding them from receiving a renal transplant. The aim of this study was to identify the problems in selecting suitable donors in a living-related transplant programme. Furthermore, the study compared the medical and social problems in donors in two 5-year periods (ie, 1988 to 1992 [historical] and 1993 to 1997 [current]).
SUBJECTS AND METHODS Between 1988 and 1992 (historical group), 167 recipients received an intrafamilial donor kidney transplant. In the same period, 120 potential recipients could not be transplanted due to problems with donors. In the 5-year period from 1993 to 1997 (current group), 365 recipients were transplanted, while 300 prospective recipients were excluded from receiving transplantation due to problems with their family donors. In the historical group, 784 prospective donors were evaluated. Of these, 353 were excluded due to extremes of age and blood group incompatibility. Similarly, in the current group, 1831 potential donors were studied. Of these, 789 were not considered for further evaluation on similar grounds. Seventy-nine unmarried females in the historical group and 158 in the current group had to be excluded on protocol when we discovered very early in our transplant programme that unmarried female donors were not able to get married after donating a kidney, because loss of a kidney was perceived as a life-long disability.
Fig 1. Problems in prospective donors. Gray bars: historical (n 5 352); white bars: current (n 5 884).
RESULTS
The prospective family donor pool was remarkably similar in both groups. The ratio of recipient:donor was around 1:6 in the historical and current groups. Medical problems in intrafamilial donors was 38.3% in the historical group and 24.6% in the current group. Hypertension was the most common medical problem, seen in 17.3% of donors in the historical and 10.9% in the current group. Urologic problems were seen in 8.5% of the donors in the historical group and 4.5% in the current group, with stone disease being the most common condition in both groups. Diabetes mellitus was seen in 6.8% of the donors in the historical group and 4.9% in the current group. Analysis of the social reasons for declining to be a donor From the Sindh Institute of Urology and Transplantation (SIUT), Dow Medical College, Karachi, Pakistan. Address reprint requests to Dr S.A.A. Naqvi, Sindh Institute of Urology and Transplantation (SIUT), Dow Medical College, Karachi, Pakistan.
0041-1345/98/$19.00 PII S0041-1345(98)00623-X
© 1998 by Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010
2286
Transplantation Proceedings, 30, 2286–2288 (1998)
DONOR SELECTION IN LIVING-RELATED TX
Fig 2. Refusal to donate due to social reasons. Gray bars: historical (n 5 352); White bars: current (n 5 884).
revealed similarity in the occurrence of different problems (Fig 1). The most common reason for refusal by the family was because the donor was the “breadwinner” in 9.1% of the historical and 12.1% of the current group (Fig 2). Intervention of in-laws and parents was the next common reason for refusal, seen in 11.1% of historical donors and 13.4% of current donors. Unwillingness among the donors themselves was another important reason for refusal to donate. Perceived life-long disability following nephrectomy was found to be the most common reason seen in a disproportionately high 25.7% of the current group, compared with 4.3% in the historical group. Fear of impotence in males and sterility in females after loss of a kidney was an important consideration. Interestingly, the gender distribution of medical problems was comparable although hypertension was more frequently seen in females, while diabetes mellitus was more commonly seen in males. However, in the category of social problems leading to refusal to donate males were predominant in all aspects, including unwillingness to donate due to perceived life-long disability. DISCUSSION
The structure of Pakistani society is predominantly feudal and tribal in rural areas of the country where two thirds of the people reside. It was therefore expected that, in communities where large families live in a joint family system, often in the same household under the patronage of the family elder, donating an organ to one’s own family member should not pose difficulty. The demonstration by the family of bringing forward an average of six prospective donors for one recipient is a testimony to close family relations. However, fear of surgery and family circumstances often caused the advantage to be dissipated.
2287
One important lesson learned from the experience of the living-related donor transplant programme at SIUT is that unmarried females should be considered for donation as a last resort. Generally marriages are arranged by the family and females who donate a kidney encounter great difficulty in finding a partner in marriage. Uninephrectomy has become a distinct stigma and is perceived by the community to render the female disabled and unfit to carry out the family obligations of bearing children and looking after the household. Social problems encountered in the study were very revealing and appeared culture-specific. The tendency of families of withholding the “breadwinner” from becoming a donor was based on the concept of disability. The majority of donors came from a poorer socioeconomic background with fragile family earnings. Absence from work in a society where social security is nonexistent was seen by the families as a big risk. Moreover, if the prospective donor was involved in manual work, loss of a kidney was looked upon as negative from the standpoint of labor fitness. Similarly, parents and in-laws kept their children away from donating because of the fear that donation would make the person unfit for work, adding to financial difficulties in the future. Again, disability was the underlying factor in unwillingness to donate a kidney in prospective donors who thought that donation would make them permanently weak and infirm. The weakness or disability was perceived as permanent. In some there was apprehension that donation would make them prone to renal failure, because the missing kidney would put more stress on the remaining one. The present study revealed that males accounted for the majority of persons refusing to donate in the social problems groups (ie, “breadwinner,” parental and in-law intervention, as well as the category of unwillingness by the prospective donors themselves). The fact that females were more willing to donate may not be truly representative. In our male-dominated society, where women lack empowerment, donation by the female is often the result of family pressures. In one study, social scientists in Pakistan documented that, in terms of adult literacy, education, and earning opportunities, women lag far behind their male counterparts.1 In our culture, women are expected to offer themselves for sacrifice for males who happen to be in an advantageous position because of their earning capability. Finally, the revelation about medical conditions in supposedly healthy donors is problematic. More than one third of the donors had medical problems hitherto not known to them. This underlines the lack of health awareness among the population. Health checks are indicated because of the high prevalence of donor medical problems. Hypertension, stone disease, diabetes mellitus, ischemic heart disease, and hepatitis were frequently diagnosed. A public education campaign highlighting the measures of keeping healthy should be promoted and warning signs of common diseases need to be publicized in the press and television so as to encourage people to seek diagnosis of their underlying ailments.
2288
CONCLUSIONS
In view of high costs and the limited dialysis centres in our country transplantation activity needs to be increased. Transplantation success is likely to increase awareness in the community. However, despite a sizeable donor pool in a living-related programme several limitations are seen due to medical and social reasons. Moreover, health awareness is necessary for earlier detection of medical problems in
NAQVI, MAZHAR, AHMED ET AL
supposedly “healthy” family donors. Family education is essential to overcome the fears of disability arising from donation of organs.
REFERENCES 1. Haq M: Country Profile, in Human Development in South Asia 1997. Oxford: Oxford University Press; 1997, p 41