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What Is Organ Donation and Transplantation? Educating Through the Doubt
What Is Organ Donation and Transplantation? Educating Through the Doubt A.F.Z. Mazziaa, C.M.S. Hoppena, L.D.A. Isquierdoa, M.L. Bourlegata, M.C. Picassoa, N. Kissmanna, R.B. Galloa, S.P.H. Júniora, V.B. Guimarãesa, C.D. Garciaa,*, E.D.C. Castroa, and V.D. Garciab a Universidade Federal de Ciências da Saúde de Porto Alegre, Porto Alegre, Brazil; and bTransplant Unit, Hospital Dom Vicente Scherer, Santa Casa, Porto Alegre, Brazil
ABSTRACT Background. Organ transplantation in Brazil is increasing, but one of its current obstacles is the negative response of the population to organ donation. Therefore, to make the process viable, it is essential that people are educated in organ donation and transplantation. The purpose of this research was to evaluate the main doubts on this subject and to clarify these issues by educating the respondents on the basis of their questions. Methods. Handout questionnaires about organ donation and transplantation were distributed in public schools. The public targets were parents, teachers, and students. The interviewers were trained medical students. Results. In this pilot study with 293 subjects, 97% of respondents had already heard about organ donation; 81% said they would donate their organs, whereas 76% said they would donate the organs of family members and 78% said they believe in the existence of organ trafficking in Brazil. Conclusions. The high percentage of respondents believing in the existence of an organ trade highlights the urgency in clarifying this topic. To do so, the population must be educated about the ethics of the process of donation, emphasizing the fact that there is no organ trade in Brazil.
I
N BRAZIL, organ and tissue donation is completely voluntary, and it is necessary to have the donor’s family consent [1]. It does not involve any financial compensation for citizens that opt for such a gesture. The organ donation process is legal and in accordance with Brazilian rules. It is observed that this process is a social issue and a very delicate theme that is still surrounded by many concerns [2]. As the result of the increase in life expectancy of the population, in addition to the increased indications of transplants, there is an extensive waiting list in Brazil. Until June 2014, the Brazilian waiting list had 28,000 subjects, with 1345 of them in our state, Rio Grande do Sul [3]. The high number of patients in need of organ transplant, in association with the lack of donors, may lead to a significant delay, which might result in the death of patients without a successful transplant. These deaths are in part caused by a low number of notifications of potential donors by health professionals and also because of negative consent from family members. This assumption can be confirmed by the data provided by the Brazilian Association of Organ Transplantation ª 2015 by Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710
Transplantation Proceedings, 47, 879e881 (2015)
(ABTO), showing that in the first half of 2014, Brazil registered a family refusal rate of 47% of reported cases; a similar rate of family refusal, 48%, was observed in our state, Rio Grande do Sul [3]. To decrease these numbers, information must be addressed to the public in an effective manner to cover the main issues. However, there are few studies in Brazil that aim to find the level of knowledge of the population about this issue. In this context, this pilot project aimed to assess the level of knowledge of the population who attended health fairs in schools. METHODS The data collection took place during the Project “Feira de Saúde” (Health Fair) from UFCSPA (Universidade Federal de Ciências da
*Address correspondence to Clotilde Druck Garcia, Correa Lima 1493, Porto Alegre, Brazil. E-mail: [email protected] 0041-1345/15 http://dx.doi.org/10.1016/j.transproceed.2015.03.018
879
880
MAZZIA, HOPPEN, ISQUIERDO ET AL Table 1. Questionnaire Results Yes
1. 2. 3. 4. 5. 6. 7. 8.
Have you ever heard about organ donation? Would you donate your organs? Would you donate the organs of your relatives? Do you know what brain death is? Do you believe in existence of organ trade? Must the family authorize the donation? Are you afraid that your organs would be withdrawn before your death? Do you know any transplanted person?
Saúde de Porto Alegre), a regular activity that occurs 6 times per year, in which students and professors from the university go to public schools located in the north of the city of Porto Alegre to talk to the community population about health in general. This activity was carried out during this event, which had a unit about organ donation and transplantation. The questionnaire was distributed to parents, students, and teachers who visited this unit. The subjects answered a questionnaire with 9 questions after the purpose of the study had been explained (Table 1). The interviewers were trained students who had already taken or had been taking elective classes on organ donation and transplantation [4]. The confidentiality of the obtained information as well as the protection of the subjects’ identities were assured. Furthermore, it was ensured that the respondents had the right of not participating and that they could interrupt the interview at any point.
RESULTS
The data collection was conducted between June 2013 and August 2014. Six fairs had been held, with a total of 293 respondents. After analyzing the responses (Table 1), it is important to note that 97% already had heard about organ donation and 75% understood the term “brain death,” but 39% were afraid that their organs would be withdrawn before the death. Most of the respondents said that they would donate their organs (81%) or the organs of their relatives (76%) and were favorable to the idea that the family must authorize the donation (84%). The other point was that 78% of respondents said that they believed in the existence of an organ trade.
285 238 224 220 229 245 113 109
(97%) (81%) (76%) (75%) (78%) (84%) (39%) (37%)
No
8 32 29 73 64 31 167 184
(3%) (11%) (10%) (25%) (22%) (11%) (57%) (63%)
Don’t Know
No Answer
e 23 (8%) 40 (14%) e e 16 (5%) 13 (4%) e
e e e e e 1 e e
practically half of the notifications of possible donors, which are done by health professionals, do not result in effective transplants. This massive number of notifications strongly affects the decrease in the waiting list. The main reasons for negative family donations are still not clear. A possible explanation might be the lack of information about the donation procedures, which could elucidate why 78% of the interviewed subjects still believed in the existence of organ trafficking. This alternative could be feasible: Coelho et al [5] concluded that the majority of the population was more likely to donate, but they did not trust the capitation and distribution system; among other reasons, a belief in the existence of an organ trade negatively affected the donation decision. CONCLUSIONS
The data analysis, together with previous findings from the literature, leads to the conclusion that the majority of the population of Brazil has knowledge about organ donation and transplantation. It is clear that this opinion about the topic is propagated among the population. However, there is still a lack of solid knowledge, especially about the existence of an organ trade. Regarding this fact, the need of investment in education is certain [6e8]. Thus, education projects about the process are necessary, which could effectively contribute to increase donation rates. This was a pilot project; therefore further analysis will be carried out after its execution.
DISCUSSION
REFERENCES
According to the results, the majority of the interviewed subjects demonstrated a good knowledge about organ donation and transplantation; 97% of them had already heard about organ donation and transplantation, 81% would donate their own organs, 76% would donate relative’s organs, and 84% of the subjects understood that the family must consent to the organ donation. Previous data from Coelho et al [5] also demonstrated good knowledge in a population about organ donation and transplantation. However, a gap remains between the potential donors and the effective ones, with family refusal as one of the biggest issues, which was represented by 47% of the cases of no donation in the first semester of 2014 [2]. Likewise,
[1] Brasil. Lei n 10.211, de 23 de Março de 2001. Avaliable in: http://www.planalto.gov.br/ccivil_03/leis/leis_2001/l10211.htm. Accessed October 07, 2014. [2] Garcia VD. Por uma política de transplantes no Brasil. São Paulo (SP): Office; 2000. [3] Associação Brasileira de Transplantes de Órgãos. Dados gerais. RBT Registro Brasileiro de Transplantes. Dados Numéricos da doação de órgãos e transplantes realizados por estado e instituição no período: Janeiro/Junhoe2014, ABTO. Available in: http:// www.abto.org.br/abtov03/Upload/file/RBT/2014/rbt-1semestre-parc. pdf. Accessed September 27, 2014. [4] Pereira JD, Pereira CMV, Soares FM, et al. Organ Transplants and Education: Experience of the Universidade Federal de Ciências da Saúde de Porto Alegre With Subjects. Transplant Proc 2014;46:1666e8. Available in: doi:10.1016/j.transproceed.2014.05. 034. Accessed September 27, 2014.
EDUCATION IN ORGAN DONATION AND TRANSPLANTATION
881
[5] Garcia CD, Barboza AP, Goldani JC, et al. Educational program of organ donation and transplantation at medical school. Transplant Proc 2008;40:1068e9. [6] Coelho JCU, Cilião C, Parolin MB, et al. Opinião e conhecimento da população da cidade de Curitiba sobre doação e transplante de órgãos. Rev Assoc Méd Bras 2007;53:421e5.
[7] Pêgo-Fernandes PM, Garcia VD. Current status of transplantation in Brazil. Sao Paulo Med J 2010;128:3e4. Available in: http:// www.scielo.br/pdf/spmj/v128n1/01.pdf. Accessed October 07, 2014. [8] Cantarovich M, Birk P, Ekbeg H, et al. First global forum on education on organ donation and transplantation for schools. Pediatr Transplant 2013;17:12e8.
ABSTRACT Background. Organ transplantation in Brazil is increasing, but one of its current obstacles is the negative response of the population to organ donation. Therefore, to make the process viable, it is essential that people are educated in organ donation and transplantation. The purpose of this research was to evaluate the main doubts on this subject and to clarify these issues by educating the respondents on the basis of their questions. Methods. Handout questionnaires about organ donation and transplantation were distributed in public schools. The public targets were parents, teachers, and students. The interviewers were trained medical students. Results. In this pilot study with 293 subjects, 97% of respondents had already heard about organ donation; 81% said they would donate their organs, whereas 76% said they would donate the organs of family members and 78% said they believe in the existence of organ trafficking in Brazil. Conclusions. The high percentage of respondents believing in the existence of an organ trade highlights the urgency in clarifying this topic. To do so, the population must be educated about the ethics of the process of donation, emphasizing the fact that there is no organ trade in Brazil.
I
N BRAZIL, organ and tissue donation is completely voluntary, and it is necessary to have the donor’s family consent [1]. It does not involve any financial compensation for citizens that opt for such a gesture. The organ donation process is legal and in accordance with Brazilian rules. It is observed that this process is a social issue and a very delicate theme that is still surrounded by many concerns [2]. As the result of the increase in life expectancy of the population, in addition to the increased indications of transplants, there is an extensive waiting list in Brazil. Until June 2014, the Brazilian waiting list had 28,000 subjects, with 1345 of them in our state, Rio Grande do Sul [3]. The high number of patients in need of organ transplant, in association with the lack of donors, may lead to a significant delay, which might result in the death of patients without a successful transplant. These deaths are in part caused by a low number of notifications of potential donors by health professionals and also because of negative consent from family members. This assumption can be confirmed by the data provided by the Brazilian Association of Organ Transplantation ª 2015 by Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710
Transplantation Proceedings, 47, 879e881 (2015)
(ABTO), showing that in the first half of 2014, Brazil registered a family refusal rate of 47% of reported cases; a similar rate of family refusal, 48%, was observed in our state, Rio Grande do Sul [3]. To decrease these numbers, information must be addressed to the public in an effective manner to cover the main issues. However, there are few studies in Brazil that aim to find the level of knowledge of the population about this issue. In this context, this pilot project aimed to assess the level of knowledge of the population who attended health fairs in schools. METHODS The data collection took place during the Project “Feira de Saúde” (Health Fair) from UFCSPA (Universidade Federal de Ciências da
*Address correspondence to Clotilde Druck Garcia, Correa Lima 1493, Porto Alegre, Brazil. E-mail: [email protected] 0041-1345/15 http://dx.doi.org/10.1016/j.transproceed.2015.03.018
879
880
MAZZIA, HOPPEN, ISQUIERDO ET AL Table 1. Questionnaire Results Yes
1. 2. 3. 4. 5. 6. 7. 8.
Have you ever heard about organ donation? Would you donate your organs? Would you donate the organs of your relatives? Do you know what brain death is? Do you believe in existence of organ trade? Must the family authorize the donation? Are you afraid that your organs would be withdrawn before your death? Do you know any transplanted person?
Saúde de Porto Alegre), a regular activity that occurs 6 times per year, in which students and professors from the university go to public schools located in the north of the city of Porto Alegre to talk to the community population about health in general. This activity was carried out during this event, which had a unit about organ donation and transplantation. The questionnaire was distributed to parents, students, and teachers who visited this unit. The subjects answered a questionnaire with 9 questions after the purpose of the study had been explained (Table 1). The interviewers were trained students who had already taken or had been taking elective classes on organ donation and transplantation [4]. The confidentiality of the obtained information as well as the protection of the subjects’ identities were assured. Furthermore, it was ensured that the respondents had the right of not participating and that they could interrupt the interview at any point.
RESULTS
The data collection was conducted between June 2013 and August 2014. Six fairs had been held, with a total of 293 respondents. After analyzing the responses (Table 1), it is important to note that 97% already had heard about organ donation and 75% understood the term “brain death,” but 39% were afraid that their organs would be withdrawn before the death. Most of the respondents said that they would donate their organs (81%) or the organs of their relatives (76%) and were favorable to the idea that the family must authorize the donation (84%). The other point was that 78% of respondents said that they believed in the existence of an organ trade.
285 238 224 220 229 245 113 109
(97%) (81%) (76%) (75%) (78%) (84%) (39%) (37%)
No
8 32 29 73 64 31 167 184
(3%) (11%) (10%) (25%) (22%) (11%) (57%) (63%)
Don’t Know
No Answer
e 23 (8%) 40 (14%) e e 16 (5%) 13 (4%) e
e e e e e 1 e e
practically half of the notifications of possible donors, which are done by health professionals, do not result in effective transplants. This massive number of notifications strongly affects the decrease in the waiting list. The main reasons for negative family donations are still not clear. A possible explanation might be the lack of information about the donation procedures, which could elucidate why 78% of the interviewed subjects still believed in the existence of organ trafficking. This alternative could be feasible: Coelho et al [5] concluded that the majority of the population was more likely to donate, but they did not trust the capitation and distribution system; among other reasons, a belief in the existence of an organ trade negatively affected the donation decision. CONCLUSIONS
The data analysis, together with previous findings from the literature, leads to the conclusion that the majority of the population of Brazil has knowledge about organ donation and transplantation. It is clear that this opinion about the topic is propagated among the population. However, there is still a lack of solid knowledge, especially about the existence of an organ trade. Regarding this fact, the need of investment in education is certain [6e8]. Thus, education projects about the process are necessary, which could effectively contribute to increase donation rates. This was a pilot project; therefore further analysis will be carried out after its execution.
DISCUSSION
REFERENCES
According to the results, the majority of the interviewed subjects demonstrated a good knowledge about organ donation and transplantation; 97% of them had already heard about organ donation and transplantation, 81% would donate their own organs, 76% would donate relative’s organs, and 84% of the subjects understood that the family must consent to the organ donation. Previous data from Coelho et al [5] also demonstrated good knowledge in a population about organ donation and transplantation. However, a gap remains between the potential donors and the effective ones, with family refusal as one of the biggest issues, which was represented by 47% of the cases of no donation in the first semester of 2014 [2]. Likewise,
[1] Brasil. Lei n 10.211, de 23 de Março de 2001. Avaliable in: http://www.planalto.gov.br/ccivil_03/leis/leis_2001/l10211.htm. Accessed October 07, 2014. [2] Garcia VD. Por uma política de transplantes no Brasil. São Paulo (SP): Office; 2000. [3] Associação Brasileira de Transplantes de Órgãos. Dados gerais. RBT Registro Brasileiro de Transplantes. Dados Numéricos da doação de órgãos e transplantes realizados por estado e instituição no período: Janeiro/Junhoe2014, ABTO. Available in: http:// www.abto.org.br/abtov03/Upload/file/RBT/2014/rbt-1semestre-parc. pdf. Accessed September 27, 2014. [4] Pereira JD, Pereira CMV, Soares FM, et al. Organ Transplants and Education: Experience of the Universidade Federal de Ciências da Saúde de Porto Alegre With Subjects. Transplant Proc 2014;46:1666e8. Available in: doi:10.1016/j.transproceed.2014.05. 034. Accessed September 27, 2014.
EDUCATION IN ORGAN DONATION AND TRANSPLANTATION
881
[5] Garcia CD, Barboza AP, Goldani JC, et al. Educational program of organ donation and transplantation at medical school. Transplant Proc 2008;40:1068e9. [6] Coelho JCU, Cilião C, Parolin MB, et al. Opinião e conhecimento da população da cidade de Curitiba sobre doação e transplante de órgãos. Rev Assoc Méd Bras 2007;53:421e5.
[7] Pêgo-Fernandes PM, Garcia VD. Current status of transplantation in Brazil. Sao Paulo Med J 2010;128:3e4. Available in: http:// www.scielo.br/pdf/spmj/v128n1/01.pdf. Accessed October 07, 2014. [8] Cantarovich M, Birk P, Ekbeg H, et al. First global forum on education on organ donation and transplantation for schools. Pediatr Transplant 2013;17:12e8.