- Email: [email protected]
Organ donation and transplantation in Brazil: university students' awareness and opinions
Organ Donation and Transplantation in Brazil: University Students’ Awareness and Opinions A.L. Peron, A.B. Rodrigues, D.A. Leite, J.L. Lopes, P.C. Ceschim, R. Alter, B.A. Roza, J.O. Pestana, and J. Schirmer ABSTRACT This study was aimed at assessing university students’ awareness and opinions about aspects of the law no. 10.221/01. This exploratory study was performed among students at the Sa˜o Paulo Federal University—UNIFESP, from 2001 to July 2002, including 1284 undergraduates in the following courses: nursing, medicine, speech and language therapy, biomedicine, and ophthalmic technology. That data show that 47.7% (333) of undergraduates are aware of the kind of donation established by the new law. Among the adolescents of first and second grades, and courses, there was a difference on the awareness about the kind of donation (P ⫽ .000). Most undergraduates (57.6%, 402) agree with consented donation. However, the high percentage—35.1% (245)—that chose the alternative “I don’t know” is remarkable. Results show that many undergraduates are unaware of the specifications of the technical files for transplants; only 48.3% (337) of them chose the correct answer, and 79.4% (554) do not believe that the order in the waiting list for transplants is respected. The conclusion is that it is worth emphasizing is that there are different opinions and levels of awareness among students, considering age, religion and religious practice, and course and level at school. In spite of unawareness and lack of belief in the principles of distribution of organs and tissue, most students are willing to be donors (68.2%).
T
HE LEAGUE FOR ORGAN AND TISSUES DONATION, established in 2001 by undergraduates of the Nursing School, started their activities with the Organ Procurement Organization of the Paulista School of Medicine, promoting education for health among the university community, transplanted patients, and their families. This cooperation motivated debates on the social impact of legal and bioethical changes in the area. Following several scientific and technological advances, law. no. 9.434 was published in 1997, allowing for the so-called presumed donation and creating the National System for Transplants (NST). The law was regulated by decree no. 2.268, in 1998, creating Centres for Notification, Procurement and Distribution of Organs (CNPDO) in each Brazilian state. The transplant legislation in Brazil, represented by law no. 9.434/97, was modified by law no. 10.221/01, raising controversial issues, including social beliefs and values concerning organ donation for transplants and the ethics of professionals in providing the accessible, fair, and equal criteria for this treatment within the Unified Health System. © 2004 by Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710 Transplantation Proceedings, 36, 811– 813 (2004)
The growth of the NST and the social pressure against the kind of donation imposed by the previous legislation motivated the publication of law no. 10.221 in 2001, replacing the presumed donation by the consented donation. A study on transplant regulation carried out among medical and nursing professionals in a university community in Sa o Paulo showed that 73% of professionals were partly aware of the law and 42% didn’t agree with the new proposal. However, the number of donors increased from 14% to 34%.1 The procurement of organs, starting with the compulsory declaration of encephalic death and ending in the withFrom the Leaque for Organ and Tissue Donation (R.A.) and Hospital Israelita Albert Einstein and Nursing Department (B.A.R.), University of Sa˜o Paulo, Sa˜o Paulo, Brazil, and Medical Department (J.O.P.) and Nursing Department (J.S.), Federal University of Sa˜o Paulo, Sa˜o˜ Paulo, Brazil. Address reprint requests to A.L. Peron, Vilia Olimpia, Rua Alvorada #116, Apto 81, Sao Paulo, SP04550-000, Brazil. Email: [email protected] 0041-1345/04/$–see front matter doi:10.1016/j.transproceed.2004.04.040 811
812
drawal of the organ donated by the family, is performed by OPO. In the Great Sa˜o Paulo, four OPOs were created to supply hospitals in the region. The OPO/EPM belongs to the CNPDO of Sa˜o Paulo State, which presently handles four OPOs in the state capital and six in the inner area of the state. Nurses who search for organs in Sa˜o Paulo questioned the fact that the small numbers of donors might be a consequence of religious and cultural taboos, such as doubts that families may have concerning the treatment of donors in intensive care units; the nonavailability of treatment before encephalic death; the fear of death: donating an organ even if the heart is beating the socioeconomic cost for those who wait for an organ to keep on living; and the attitudes of health professionals about transplant.2 This study is aimed at identifying university students’ awareness and opinions about some aspects modified by law no. 20.221/01; including the withdrawal of organs, tissues, and parts of the human body for transplants and treatments under consented donation, about technical issues (single line), and about student willingness to donate. MATERIALS AND METHODS A descriptive and exploratory study performed among students at the Sa˜o Paulo Federal University—UNIFESP, from 2001 to July 2002, included 698 1284 of $54.4% undergraduates in the following courses: nursing (ENF), medicine (MED), speech and language therapy (FONO), biomedicine (BIO), and ophthalmic technology (TO). The data were collected through questionnaires based on the content of law no. 9.434/97 and law no. 10.221/01. The study was approved by the Research Ethics Committee. The questionnaire was administered with the students’ voluntary participation during academic activities. The data were compiled by evaluation of descriptive statistics with a significance level of 5%. The theoretical reference of bioethics was used for the analysis of contradictions.
RESULTS AND DISCUSSION
Of the total number of undergraduates, 47.7% (333) were aware of the kind of donation established by the new law of transplants (consented donation), while 43.8% (306) chose the alternative “I am not aware.” However, among the ENF and MED undergraduates, the awareness was similar: 51.1% (133) and 52.6% (120). The highest percentage of those who chose the correct alternative was among the TO undergraduates, 64.3% (9), and the lowest, respectively, among the undergraduates in BIO, 34.1% (30), and FONO, 37.3% (41). These differences might relate to a greater involvement of ENF, MED, and TO undergraduates with transplanted patients during internship programs. Among the adolescents of first and second grades, and courses, there was a statistically significant difference on the awareness about the kind of donation (P ⫽ .000). In the period during which law no. 9.434/97 was in force, a study carried out by Roza1 in the same university community showed that among 300 health professionals,
PERON, RODRIGUES, LEITE ET AL
most doctors and nurses (42.4%, 101) did not agree with presumed donation and the single row. Nowadays, the new law adopted the consented donation. Most of UNIFESP undergraduates (57.6%, 402) agree with consented donation. However, the high percentage—35.1% (245)—that chose the alternative “I don’t know” is remarkable. Despite agreeing with this kind of donation, only 40.0% (279) of the undergraduates know that it is necessary to notify the family of the wish to be a donor, so that consented donation is achieved. However, the registry in the national or driver’s license was still remembered by 45.1% (315) of the undergraduates. The undergraduates’ awareness of the specifications of the technical files for transplant patients, defined by the legislation in 1997, shows that only 48.3% (337) chose the correct answer (specific and priority list). It is worth mentioning that the UNIFESP university community is privileged to have the OPO-EPM, which includes 113 public and private hospitals. In 2002, 327 notifications (0.9 notifications per day) took place with 64 donations (10 donors per million of inhabitants). Nowadays, it is the second biggest institution worldwide in terms of renal transplants per year, according to the Brazilian Association for Transplants and the Ministry of Health.3 This study showed that 79.4% (554) of the undergraduates do not believe that the order in the waiting list for transplants is respected, while only 20.6% (144) do. Considering data published by Roza,1 among health professionals in the same university community, 58.4% (139) do not believe the order is respected. This data show there has been an increase in the disbelief that the order of registration in the waiting list is respected. This may be related to the fact they still do not have professional experience. On the other hand, 68.2% (476) of the undergraduates at UNIFESP are willing to be donors, 27.8% (194) are not, and 4.0% (28) did not answer.
CONCLUSIONS
The results of the study led to the conclusion that some medical, biomedical, nursing, speech and language therapy, and ophthalmic technology students are not familiar with the kind of donation and how NST works, since only 40% know the requirements for consented donation and the criteria used for allocation (48.3%). Given that these health professionals will soon work for the community, in hospital environments and with transplants, they should be familiar with donation and organ and tissue transplant criteria, especially when 79.4% do not believe the order in the waiting list is respected. It is worth emphasizing that the premises established by the researchers were confirmed: there are different opinions and levels of awareness among students; considering age, religion and religious practice,
DONATION AND TRANSPLANTATION IN BRAZIL
and course and level at school. In spite of unawareness and lack of belief in the principles of distribution of organs and tissue, most students are willing to be donors (68.2%). However, only 40% know that donation is only possible with the family consent. The data in this investigation allow us to state that either the content is insufficient or the learning strategies related to this subject are inappropriate at UNIFESP’s health courses.
813
REFERENCES 1. Roza BA: Master’s degree dissertation presented at Sa˜o Paulo Federal University, 2000 2. Puschet VAA, Rodrigues AS, Moraes MW: Sa˜o Paulo, year 26 v. 1, January/March, 2002, p 167 3. Ministry of Health (Ministe´rio da Sau ´de), Health Assistance Department: Administration Report, Health Assistance Department, 1998/2001/Ministry of Health. 2nd ed. Reviewed and modified. Brasilia: Ministry of Health, 2002, p 220
T
HE LEAGUE FOR ORGAN AND TISSUES DONATION, established in 2001 by undergraduates of the Nursing School, started their activities with the Organ Procurement Organization of the Paulista School of Medicine, promoting education for health among the university community, transplanted patients, and their families. This cooperation motivated debates on the social impact of legal and bioethical changes in the area. Following several scientific and technological advances, law. no. 9.434 was published in 1997, allowing for the so-called presumed donation and creating the National System for Transplants (NST). The law was regulated by decree no. 2.268, in 1998, creating Centres for Notification, Procurement and Distribution of Organs (CNPDO) in each Brazilian state. The transplant legislation in Brazil, represented by law no. 9.434/97, was modified by law no. 10.221/01, raising controversial issues, including social beliefs and values concerning organ donation for transplants and the ethics of professionals in providing the accessible, fair, and equal criteria for this treatment within the Unified Health System. © 2004 by Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710 Transplantation Proceedings, 36, 811– 813 (2004)
The growth of the NST and the social pressure against the kind of donation imposed by the previous legislation motivated the publication of law no. 10.221 in 2001, replacing the presumed donation by the consented donation. A study on transplant regulation carried out among medical and nursing professionals in a university community in Sa o Paulo showed that 73% of professionals were partly aware of the law and 42% didn’t agree with the new proposal. However, the number of donors increased from 14% to 34%.1 The procurement of organs, starting with the compulsory declaration of encephalic death and ending in the withFrom the Leaque for Organ and Tissue Donation (R.A.) and Hospital Israelita Albert Einstein and Nursing Department (B.A.R.), University of Sa˜o Paulo, Sa˜o Paulo, Brazil, and Medical Department (J.O.P.) and Nursing Department (J.S.), Federal University of Sa˜o Paulo, Sa˜o˜ Paulo, Brazil. Address reprint requests to A.L. Peron, Vilia Olimpia, Rua Alvorada #116, Apto 81, Sao Paulo, SP04550-000, Brazil. Email: [email protected] 0041-1345/04/$–see front matter doi:10.1016/j.transproceed.2004.04.040 811
812
drawal of the organ donated by the family, is performed by OPO. In the Great Sa˜o Paulo, four OPOs were created to supply hospitals in the region. The OPO/EPM belongs to the CNPDO of Sa˜o Paulo State, which presently handles four OPOs in the state capital and six in the inner area of the state. Nurses who search for organs in Sa˜o Paulo questioned the fact that the small numbers of donors might be a consequence of religious and cultural taboos, such as doubts that families may have concerning the treatment of donors in intensive care units; the nonavailability of treatment before encephalic death; the fear of death: donating an organ even if the heart is beating the socioeconomic cost for those who wait for an organ to keep on living; and the attitudes of health professionals about transplant.2 This study is aimed at identifying university students’ awareness and opinions about some aspects modified by law no. 20.221/01; including the withdrawal of organs, tissues, and parts of the human body for transplants and treatments under consented donation, about technical issues (single line), and about student willingness to donate. MATERIALS AND METHODS A descriptive and exploratory study performed among students at the Sa˜o Paulo Federal University—UNIFESP, from 2001 to July 2002, included 698 1284 of $54.4% undergraduates in the following courses: nursing (ENF), medicine (MED), speech and language therapy (FONO), biomedicine (BIO), and ophthalmic technology (TO). The data were collected through questionnaires based on the content of law no. 9.434/97 and law no. 10.221/01. The study was approved by the Research Ethics Committee. The questionnaire was administered with the students’ voluntary participation during academic activities. The data were compiled by evaluation of descriptive statistics with a significance level of 5%. The theoretical reference of bioethics was used for the analysis of contradictions.
RESULTS AND DISCUSSION
Of the total number of undergraduates, 47.7% (333) were aware of the kind of donation established by the new law of transplants (consented donation), while 43.8% (306) chose the alternative “I am not aware.” However, among the ENF and MED undergraduates, the awareness was similar: 51.1% (133) and 52.6% (120). The highest percentage of those who chose the correct alternative was among the TO undergraduates, 64.3% (9), and the lowest, respectively, among the undergraduates in BIO, 34.1% (30), and FONO, 37.3% (41). These differences might relate to a greater involvement of ENF, MED, and TO undergraduates with transplanted patients during internship programs. Among the adolescents of first and second grades, and courses, there was a statistically significant difference on the awareness about the kind of donation (P ⫽ .000). In the period during which law no. 9.434/97 was in force, a study carried out by Roza1 in the same university community showed that among 300 health professionals,
PERON, RODRIGUES, LEITE ET AL
most doctors and nurses (42.4%, 101) did not agree with presumed donation and the single row. Nowadays, the new law adopted the consented donation. Most of UNIFESP undergraduates (57.6%, 402) agree with consented donation. However, the high percentage—35.1% (245)—that chose the alternative “I don’t know” is remarkable. Despite agreeing with this kind of donation, only 40.0% (279) of the undergraduates know that it is necessary to notify the family of the wish to be a donor, so that consented donation is achieved. However, the registry in the national or driver’s license was still remembered by 45.1% (315) of the undergraduates. The undergraduates’ awareness of the specifications of the technical files for transplant patients, defined by the legislation in 1997, shows that only 48.3% (337) chose the correct answer (specific and priority list). It is worth mentioning that the UNIFESP university community is privileged to have the OPO-EPM, which includes 113 public and private hospitals. In 2002, 327 notifications (0.9 notifications per day) took place with 64 donations (10 donors per million of inhabitants). Nowadays, it is the second biggest institution worldwide in terms of renal transplants per year, according to the Brazilian Association for Transplants and the Ministry of Health.3 This study showed that 79.4% (554) of the undergraduates do not believe that the order in the waiting list for transplants is respected, while only 20.6% (144) do. Considering data published by Roza,1 among health professionals in the same university community, 58.4% (139) do not believe the order is respected. This data show there has been an increase in the disbelief that the order of registration in the waiting list is respected. This may be related to the fact they still do not have professional experience. On the other hand, 68.2% (476) of the undergraduates at UNIFESP are willing to be donors, 27.8% (194) are not, and 4.0% (28) did not answer.
CONCLUSIONS
The results of the study led to the conclusion that some medical, biomedical, nursing, speech and language therapy, and ophthalmic technology students are not familiar with the kind of donation and how NST works, since only 40% know the requirements for consented donation and the criteria used for allocation (48.3%). Given that these health professionals will soon work for the community, in hospital environments and with transplants, they should be familiar with donation and organ and tissue transplant criteria, especially when 79.4% do not believe the order in the waiting list is respected. It is worth emphasizing that the premises established by the researchers were confirmed: there are different opinions and levels of awareness among students; considering age, religion and religious practice,
DONATION AND TRANSPLANTATION IN BRAZIL
and course and level at school. In spite of unawareness and lack of belief in the principles of distribution of organs and tissue, most students are willing to be donors (68.2%). However, only 40% know that donation is only possible with the family consent. The data in this investigation allow us to state that either the content is insufficient or the learning strategies related to this subject are inappropriate at UNIFESP’s health courses.
813
REFERENCES 1. Roza BA: Master’s degree dissertation presented at Sa˜o Paulo Federal University, 2000 2. Puschet VAA, Rodrigues AS, Moraes MW: Sa˜o Paulo, year 26 v. 1, January/March, 2002, p 167 3. Ministry of Health (Ministe´rio da Sau ´de), Health Assistance Department: Administration Report, Health Assistance Department, 1998/2001/Ministry of Health. 2nd ed. Reviewed and modified. Brasilia: Ministry of Health, 2002, p 220