NDT Advance Access originally published online on November 9, 2005
Nephrology Dialysis Transplantation 2006 21(2):499-509; doi:10.1093/ndt/gfi238
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© The Author [2005]. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org
Original Articles: Dialysis and Transplantation
Efficacy of an educational programme for secondary school students on opinions on renal transplantation and organ donation: a randomized controlled trial
Chair of Nephrology, Internal Medicine Department, University of Turin, Italy
Correspondence and offprint requests to: Giorgina B Piccoli, Cattedra Di Nefrologia, Departimento Di Medicina Interna, Universita Degli Shidi di Torino, Corso dogliotti 14, 10126 Torino, Italy. Email: gbpiccoli{at}hotmail.com; gbpiccoli{at}yahoo.it
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Abstract |
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 Top Abstract IntroductionMaterials and methodsResultsDiscussionAppendix I First questionnaire...Appendix II Second questionnaire...Appendix III Second...References |
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Context. Organ shortage for transplantation is a crucial problem; educational interventions may increase donations and decrease opposition.
Objective. To test the efficacy of an educational programme on opinions on organ transplantation and kidney donation.
Design and Participants. Cluster Randomized Controlled Trial: eight intervention and eight control schools were randomly selected from the 33 public schools that agreed to participate. Targets: students in the last 2 years of secondary school (17–18 years); seven schools per group completed the study.
Educational programme. Intervention: first questionnaire (anonymous); 2 h lesson in each class; 2 h general session with patients and experts; second questionnaire. Control: questionnaires.
Main outcome measures. Differences between questionnaires (comparative analysis); interest; satisfaction with the programme; (cross-sectional analysis).
Results. 1776 first, 1467 second questionnaires were retrieved. Living kidney donation: at baseline 78.8% of students would donate a kidney to a relative/friend in need. The answers were unaffected by type of school but depended on sex (females more prone to donate, P<0.001); the answers did not change after the lessons. Cadaveric kidney donation: baseline opinions were mixed (intervention schools: 31.5% yes, 33.7% no, 34.8% uncertain), depending on type of school (classical-scientific high schools more positive than technical institutes, P<0.001), sex (males more prone to donate, P<0.001).
Answers on living and cadaveric donation were correlated (P<0.001). The educational intervention increased favourable (31.5 to 42.9%) and uncertain (34.8 to 41.1%) opinions and decreased negative ones (33.7 to 16%) (P<0.001).
Conclusions. Educational interventions are effective in increasing interest and improving opinions about cadaveric organ donation.
Keywords: educational campaign; high school; organ donation; randomized controlled trial
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Introduction |
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TopAbstractIntroductionMaterials and methodsResultsDiscussionAppendix I First questionnaire...Appendix II Second questionnaire...Appendix III Second...References |
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The shortage of organs for transplantation is a growing problem [1–3]. In the case of life-saving grafts, the discrepancy between organ availability and clinical needs results in an excess of deaths; in the case of non-life-saving transplants, it leads to long waiting-lists and increased morbidity and health-care costs [1–6]. The discrepancy has been magnified by advances in transplantation that have extended the indications to elderly and fragile patients [1,5–7].
Opposition to organ donation (from 15% to about 50% of cases) is a significant problem [8–10]. Educational programmes, promoting a positive attitude toward organ donation, may play an important role in decreasing the opposition [11–17]. The most positive results have been recorded in Spain, where favourable legislation is accompanied by widespread educational campaigns [18,19].
High-school students are considered very important targets in educational campaigns, also because of indirect family involvement [11–17]. While the relevant data are very interesting and clinically sound, evidence concerning the efficacy of educational programmes is still scant and, despite the expectation of an important effect of education on the opinions of the general population on organ donation, robust study design, such as RCTs were only very seldom employed.
In the present study, we used a randomized controlled trial (RCT) design to evaluate the effects of an educational programme on the opinions of secondary school students about living and cadaveric kidney transplantation, chosen because of the particular interest in this young subset of the overall population, on which most of the educational programmes are presently targeted [12–17].
A cluster design was chosen because of the need to interact with classes of students in the schools and to minimize contamination. Interest in the topic, sources of information and student satisfaction with the lessons were also analysed.
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Materials and methods |
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TopAbstractIntroductionMaterials and methodsResultsDiscussionAppendix I First questionnaire...Appendix II Second questionnaire...Appendix III Second...References |
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Selection and randomization of the schools
The study was performed in Torino, a northern Italian industrial city with about 900 000 inhabitants. The targets were fourth- and fifth-year secondary school students (median age 17 and 18 years).
The selection considered all public secondary schools listed in the Turin white pages. Seven of the 48 schools were excluded: 2 because of the need for specific teaching skills (blind and deaf-mute students), 4 were the targets of a programme by local patient associations and 1 had already participated in a pilot programme in 2001–2002 (for the sake of the validation of the questionnaires employed in the present study). The remaining 41 schools were contacted by phone and 33 agreed to participate.
Randomization was performed using concealment of allocation by means of sequentially labelled sealed opaque envelopes: 16 schools were randomized for participating to the programme as interventions or controls for the 2002–2003 school year (Figure 1).
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Intervention and questionnaires
The intervention consisted of the administration of a first questionnaire, two lessons and a second questionnaire. The control consisted of the two questionnaires only. Due to the particular structure of the programme, based on an educational intervention, blinding of participants was not possible.
The anonymous questionnaires are reported in Appendixes I–III. They consisted mainly of multiple-choice questions, plus several optional open-ended questions. The questions on transplantation and brain death employed terms commonly used in newspapers; these questions were defined by the working group of nephrologists, with the help of a journalist who provided the newspaper articles used to draft the questions. The questionnaires were validated in a pilot study in 2000–2001 (‘Vera e Libera Arduino’ High School).
The first questionnaire contained questions on: interest, level of knowledge, opinions on kidney donation (living and cadaveric) and ethical aspects of transplantation (Appendix I). It was administered to the students by their teachers and retrieved within 1 week.
The first lesson (2 h) was conducted in small groups (10–30 students) by a trained Nephrology fellow, on average 1 week after completion of the first questionnaire.
The main subjects discussed in the lesson were: prevalence, incidence and causes of kidney diseases in the world; history of dialysis and transplantation, main results, quality of life, allocation criteria and health globalization (including the trade in human organs).
The second lesson took place 2–4 weeks after the first one. It was performed in larger groups (3–8 classes, depending on the school organization) by a nephrologist, supported by Nephrology fellows, patients and experts. The results of the first questionnaires were shown with overhead transparencies–slides and discussed with the students; visual aids were also employed, dealing with different aspects of dialysis and transplantation. The teaching team encouraged questions and answers on the discussed subjects.
The shorter second questionnaire (Appendixes II and III) proposed again the main questions of the first questionnaire. In the intervention schools, it included questions on satisfaction with the lessons and was retrieved at the end of the second lesson. In the control schools, it included suggestions for an educational programme and was administered in the same way as the first questionnaire, at an interval of 2–3 weeks. To avoid cultural resistance, no question testing knowledge was included.
Training of the fellows
Training of the Nephrology fellows took place within the activities of the post-graduate Nephrology School, in the form of a dedicated course given by the Nephrology teachers (G.B.P. and G.P.S.).
Data analysis
The sample size was calculated by the Stata 8.0 software. Alpha error was set at 0.05; statistical power at 90%. Taking into account an average prevalence of 35% of negative opinions on cadaveric organ donation (average regional data), for identifying a 50% reduction of negative opinions on cadaveric donations, 134 students per group would be needed.
The number of cases enrolled was planned to be at least double, since we had no data allowing us to predict the number of schools and students per school that would complete the intervention.
The statistical analysis was performed with SPSS (version 11.5). The descriptive analysis used median and range for age (the only continuous variable) and prevalence (%) for all the other variables. The results are expressed in terms of prevalence (cross-sectional analysis) and change in prevalence (comparative analysis).
According to the Italian secondary school system (5 years of study, from the ninth grade onwards), the schools were stratified into technical institutes, preparing the students for the work market, and licei (with classical or scientifical orientation), usually preparing the students for university.
Univariate analysis: For the first questionnaire, Pearson's chi-square and chi-square test of independence were used to investigate the relationships between the opinions on organ donation and sex, type of school, previous information and interest in the subject, as well as the relationships between the opinions on living and cadaveric donation.
For the second questionnaire, the same tests were used to investigate the relationships between the opinions on organ donation and sex, type of school and discussion within the family, and the relationships between opinions on living and cadaveric donation.
Logistic regression was performed using the positive answer on living or cadaveric donation as dependent variable and the answers testing positively in the univariate analysis as covariates. To quantify the differences between the first and second questionnaires in terms of relative risk (RR), we added the covariate ‘type of questionnaire’ (first vs second) in a further model, applied separately for the intervention and control schools. The statistical significance was fixed at P<0.05.
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Results |
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TopAbstractIntroductionMaterials and methodsResultsDiscussionAppendix I First questionnaire...Appendix II Second questionnaire...Appendix III Second...References |
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Overall data
Fourteen of the 16 randomized schools completed the study (Table 1). Two schools did not complete the programme, one intervention school only performed the general meeting, while a control school also involved second year students. These schools did not show any significant difference from those completing the study.
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In the intervention schools, 937 students answered the first questionnaire (78% of those enrolled in the classes), while 808 (68%) answered the second questionnaire; in the control schools, 739 (83%) students answered the first questionnaire, 659 (74%) the second.
There were more technical institutes among the control schools, while there were more high schools ‘licei’ in the intervention group. The male/female ratio also differed among the schools, as a reflection of their specific orientations (Table 1).
Interest in transplantation and sources of information
More than half of the students (56.7%) were interested in transplantation, while 32.9% reported never having thought about it, 4.5% were not interested, 3.3% found the subject ‘disturbing’ and 2.1% reported another opinion; blanks were 0.5%.
Television was the main source of information (86.9%) in all schools, followed by newspapers (46.5%); other sources played minor roles (radio 7.5%, friends 5.8%, family 15%, school 10.2%). No difference in the role of television was found between intervention and control schools or between high schools and technical institutes. The role of newspapers was higher in the control schools (52 vs 42%, P = 0.002), although the difference disappeared after stratification for type of school (high schools ‘licei’ 55%, technical institutes 39%, P<0.001).
Living donor: baseline opinions, first questionnaire (Table 2)
In general, there was a positive attitude toward living donor transplantation (overall 78.8%), with no significant difference between intervention and control schools (P = 0.066) or between high schools ‘licei’ and technical institutes (P = 0.082). Females were more likely to answer positively (P<0.001), as were students interested in transplantation (83.4 vs 72.2% in non-interested students, P<0.001). Moreover, 60.5% of students who declared that they would donate a kidney were interested in transplantation, while only 39.5% of those who answered negatively were interested (P<0.001).
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In the logistic regression, statistical significance was confirmed for sex and interest (Table 4). Over half of the students stated that if they were on dialysis they would accept a kidney from a living donor (56.1% intervention, 61.2% control schools, P = 0.052). Only 10.6% of the students would directly ask a family member; the fear of placing a loved one in short- or long-term danger was the main concern.
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Overall, about half of the students added open comments (63.7% of those who answered positively, 52.6% of those contrary and 45.7% of those uncertain); 36.6% of students who would donate a kidney considered donation a natural act.
The main reasons for not donating were fear of surgery (21.1%) or other risks (5.2%), fear of living with only one kidney (13.2%) and difficulty in ‘managing the situation’ (7.9%).
Uncertainties were mainly motivated by lack of information (19.6%) and by the feeling that ‘actually being in the situation’ would be different (11.1%).
Living donor: second questionnaire (Table 2)
The positive attitude toward living kidney donation was confirmed (overall 73.8%), with no difference between intervention and control schools (P = 0.586) or between presence and absence of discussion within the family (P = 0.998). Significant differences were present for the type of school (technical school students more prone to donation than ‘licei’ students, P = 0.029) and sex (females more prone to donate than males, P = 0.010).
In the logistic regression, statistical significance was confirmed only for the type of school (Table 4).
Living donor: differences between first and second questionnaires (Table 2)
In the intervention schools, no difference was found between the first and second questionnaires. In the control schools, the prevalence of positive opinions decreased from 80.0 to 73.6% (P = 0.013), while negative and uncertain opinions increased (negative: 1.4 to 2.3%; uncertain: 18.6 to 24.1%).
In the logistic regression, the intervention and control schools were analysed separately, with first vs second questionnaire as covariate. The type of questionnaire had no influence in the intervention schools, while a significant decrease in positive answers was recorded in the control schools.
Cadaveric donor: baseline data (Table 3)
The attitude toward cadaveric donation was significantly more positive in control schools than in intervention schools (P<0.001). There was also a significantly higher prevalence of positive answers in high schools (43.4%) than in technical institutes (28.9%) (P<0.001).
Therefore, the difference between intervention and control schools disappeared after stratification for the type of school (P = 0.062 technical institutes and P = 0.082 high schools).
There was a significant difference between the sexes, although in the opposite direction to that for living donation, with males being more favourable to cadaveric donation (38.9 vs 32.9%, P<0.001).
The logistic regression confirmed that males, high school students, controls and interested students had a higher probability of answering positively (Table 4).
Open answers were given by 60% of the students who answered yes, 55.6% of those who answered no, and 42.8% of uncertain students. Saving another life was the main reason for positive answers (27.6%), while the impossibility of deciding for someone else was the main reason for a negative response (20.5%), followed by the lack of identification of death with brain death (‘if the heart beats, there is hope’: 15.1%; a variant answer was the fear of ‘killing’ a loved one: 4.8%). Organ donation was considered an unnatural practice by 5.4%, while 3.2% stated that they did not trust doctors.
The main reason for the uncertain answers was the feeling that ‘the real situation would be different’ (16%), followed by lack of knowledge of the dead person's opinions on the topic during life (11.6%).
Opinions on living and cadaveric donation were highly correlated (P<0.001 for positive answers).
Cadaveric donor: second questionnaire (Table 3)
The initial difference in opinion between intervention and control schools disappeared at the second questionnaire: 43.1% of students in the intervention group and 41.4% in the control group were favourable toward cadaver renal transplantation. However, the difference between high schools and technical institutes was confirmed (P<0.001), as was the difference between males and females (P = 0.038). Discussion within the family was significantly correlated with a positive attitude toward cadaveric donation (P = 0.048).
Opinions on living and cadaveric donation were significantly correlated (P = 0.0003).
Logistic regression confirmed that males, high school students and those who discussed the subject within the family had a higher probability of answering positively (Table 4).
Cadaveric donor: differences between first and second questionnaires (Table 3)
There was no significant change in attitude in the control schools. In the intervention schools, the prevalence of positive and uncertain answers increased significantly, while negative answers decreased (P<0.001).
Logistic regression (Table 4) confirmed the lack of change between first and second questionnaires in the control schools, as well as the significant difference between the sexes and between types of school. In contrast, the type of questionnaire was highly significant in the intervention schools, with a relative risk of 1.6 of positive answers in the second vs first questionnaire. Interestingly, the educational intervention diminished the effect of sex but not that of type of school, confirming the cultural sensitivity of opinions on transplantation.
Satisfaction with the programme
The vast majority of students liked the programme (98.3%) and suggested extending it to other schools (98%). The favourite subjects were: dialysis, difference between brain death and coma and patient experiences.
Fifty-eight percent of students discussed transplant issues with their families, although the prevalence differed between schools: 65.7% in high schools vs 55.3% in technical schools (P = 0.007).
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Discussion |
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TopAbstractIntroductionMaterials and methodsResultsDiscussionAppendix I First questionnaire...Appendix II Second questionnaire...Appendix III Second...References |
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The results of our study of over 1500 students, the first to use a RCT design, cast light on how ‘older teenagers’ view some important aspects of transplantation and on the effects of an in-depth educational intervention on opinions about organ donation in this age group.
The baseline opinions in this target population (penultimate and final year secondary school students, 17 and 18 years of age) were the result of a general interest in kidney transplantation, in about half of the cases (56.7%), and of information derived mainly from the mass media (television being the main source of information: 86.9% of students).
The baseline opinions were remarkably different for living and cadaveric renal donation. Most students (78.8%) stated that they would donate a kidney to a close relative (brother or sister in the example used), without a significant difference between types of school (high school vs technical institutes) or between intervention and control schools.
The only unexpected finding was a decrease in positive answers at the second questionnaire in the control schools. In both the intervention and control schools, there was an approximately 10% lower response rate from the first to the second questionnaire. In the intervention schools, this was probably due to administration of the second questionnaire on a single occasion (last lesson), instead of during a school week; in the control schools, it could have reflected a lower interest level. Nevertheless, a selection bias affecting only the opinions on living donation and not the opinions on cadaveric donation seems unlikely. Other possibilities, e.g. an effect of family discussion, deserve further analysis.
The answers by the secondary school students demonstrate that the concept of an improvement in quantity and quality of life with kidney transplantation is well known, that there is little cultural resistance to transplantation of a human organ, and that the reasons for a low prevalence of living kidney donation in Italy, as in most Mediterranean countries, should be sought elsewhere [20,21].
The main reason for offering to donate a kidney was appreciation of the importance of emotional and family links. Interestingly, only about half of the students would accept a kidney from a close relative, and in most cases only in case of an explicit offer by the donor. The main reason for this discrepancy was fear of endangering the life or health of a loved one.
This pattern suggests that the reasons why living donations are relatively infrequent in Italy, where family structure is relatively well preserved, lie more in the patient's refusal of kidney donation than in the lack of offers [20]. Perhaps we should focus educational interventions more on the low risks for donors than on the advantages for the recipients. The answers were unaffected by the type of school, which was an indirect reflection of the educational level (higher in the high schools than in the technical schools).
The opinions on cadaveric donation were in sharp contrast with those on living donation. In the intervention schools, the baseline answers were almost evenly divided between favourable, contrary and uncertain, with a strong influence of the type of school: this observation is in keeping with previous reports of a relationship between educational level and prevalence of opposition to organ donation [11–17,22,23]. The random inclusion of more high schools among the control schools was the cause of the different baseline answers.
The attitudes toward cadaveric and living donation differed between the sexes: males were more favourable to cadaveric donation, females to living donation. Although the socio-cultural implications of this finding are beyond the scope of this study, it should be remembered when educational interventions are planned in predominantly male or female environments.
In both cases, positive opinions on living or cadaveric donation were correlated with interest in transplantation. This suggests that increasing interest in these subjects through discussions in schools (an under-used source of information) could be a primary means to improve attitudes toward organ donation [11–17,22,23].
The educational intervention did not affect the already positive opinions on living donor transplantation, but significantly changed the opinion pattern concerning cadaveric donation, with a decrease in opposition (from 33.7 to 16%) and a consequent increase in positive and uncertain opinions (from 31.5 to 42.9% and from 34.8 to 41.1%) (P<0.001).
In agreement with previous reports, the lack of identification of brain death with ‘real death’ was one of the main reasons for refusal of consent [11–16,22]. However, in our study, lack of knowledge about the opinions of the dead person was as important as the uncertainty about brain death. Only a minority of students reported not trusting doctors (3.2%) and, again in partial disagreement with other reports, the cult of the cadaver and other religious or cultural aspects played a minor or negligible role, despite the relatively homogeneous Catholic cultural milieu [11–16].
The students exhibited curiosity about the whole pathway of renal replacement therapy, dialysis ranking first, followed by brain death and patient experiences. Therefore, attempts to give a complete idea of the vast world of dialysis and transplantation may be an effective way to raise interest and enhance critical appreciation. This is supported by the relatively high prevalence of discussion within the family (58.2%), which was also weakly correlated with positive opinions on cadaveric donation, as in previous reports [11–13], and by the success of the initiative (over 98% of the students liked the programme and suggested its extension to other schools).
In this regard, the involvement of post-graduate Nephrology fellows in the educational programme had several advantages, thus constituting an example that could be followed in other settings: it supplied the project with young people with a direct interest in renal replacement therapy, at an age ‘not too distant’ from the late teens, and thus facilitated discussion. It also drastically reduced the time investment of the older nephrologists, who were only involved in the general meetings. For a 50-school programme covering an urban area of almost 1 000 000 inhabitants, a pool of 10 Nephrology fellows had to dedicate only about one morning per 18 months for the class-by-class work (two per month including the final meetings), a reasonable investment considering the importance of these educational issues.
Furthermore, considering the educational programme as part of the routine of post-graduate nephrology teaching may effectively underline the importance of developing communication skills aimed at the overall population, too often considered marginal by the medical profession.
The strength of this study was its robust design (RCT), enrolling a large number of subjects in an important sector of the general population [11–17]. However, the study had several limitations that will be addressed in further developments. First, it did not allow correlation of the knowledge level with the opinions on transplantation. The decision not to include knowledge questions was motivated by the desire to avoid inducing ‘resistance’ in the students, who were repeatedly told that the questionnaires were not ‘tests’. Secondly, we could only assess the short-term efficacy of the intervention; a further analysis at some distance from the educational intervention is needed to evaluate possible declines in knowledge and opinions. Thirdly, the anonymous nature of the questionnaires prevented us from analysing opinion flows; recording student codes was felt to be too complex on such a large scale. A test using anonymous student codes will be planned on a smaller scale. Indeed, in view of the importance of cultural influences on decisions about living and cadaveric donation, the results of our study were probably setting-sensitive; nevertheless, they may be a starting point for the systematic application of large-scale RCTs in this educational context [17,21–23].
Furthermore, the results were gathered in a relatively homogeneous subset of the overall population, of a single large city in a single country. As the opinions on renal transplantation are exquisitely culture-sensitive, the results may not be directly extrapolated to cover different realities; however, this important point may be overcome only by performing analyses with a similar design in different settings. This goal will be pursued in the near future by our study group, planning to analyse the differences between the results presently obtained in a large northern Italian city with those gathered in the same student population in small countryside towns, and in a large southern Italian city (Naples). The present study was indeed performed as a part of a larger epidemiological observatory, and the preliminary data, as well as data on other aspects not covered by the present article have already been published [24–26].
Last but not least, another limitation of this study was not taking into account correction for cluster randomization. However, this methodological issue was not yet a matter of discussion at the time of planning and performing the study (no mention of the classic statistics textbooks, such as Woolson-Clarke 2002; Consort statement on cluster randomization was published by the BMJ in 2004).
At the time of this study, no reference calculation of the effect of an educational intervention existed. Therefore, this study may indeed supply data for precise sample size calculation, giving an estimation of difference in opinion rates, as the basis for further progress in this important health care research issue.
In conclusion, an educational approach is effective in changing the attitude of secondary school students toward organ donation, at least in the short term.
The discrepancy between opinions on living and cadaveric donation suggests a positive attitude toward transplantation but a lack of knowledge/acceptance of specific aspects. Fear of surgical procedures and of life with a single kidney, together with the patient's concern about causing pain to a loved one, should be taken into account when planning educational interventions on living donation. The lack of knowledge concerning brain death and the need to know the dead person's opinions during life reflect the need for systematic discussions and strongly support the development of educational programmes in this sector of the general population.
Further analyses are needed, in particular to cover the complex ethical and sociological issues at the basis of the answer patterns recorded; a multidisciplinary team, with experts in communication, social sciences and psychology could offer the best possibility to learn from the experience of a wide and interactive discussion with the younger subsets of our general population.
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Appendix I First questionnaire (All schools) |
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TopAbstractIntroductionMaterials and methodsResultsDiscussionAppendix I First questionnaire...Appendix II Second questionnaire...Appendix III Second...References |
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Appendix II Second questionnaire (Intervention schools) |
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TopAbstractIntroductionMaterials and methodsResultsDiscussionAppendix I First questionnaire...Appendix II Second questionnaire...Appendix III Second...References |
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Appendix III Second questionnaire (Control schools) |
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TopAbstractIntroductionMaterials and methodsResultsDiscussionAppendix I First questionnaire...Appendix II Second questionnaire...Appendix III Second...References |
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Acknowledgments |
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To our patients: Bandiziol P, Cravero L, Daghero D, De Martino F, Imbriani R, Longo L, Macaluso E, Peccarrisi C, Pozzati N, Petroni B, Santoro A, Teppati G, for their participation and support of this programme. COFIN 2002 – Ministry of Education, University and Research of Italy to Piccoli Giuseppe, Post-graduate school of Nephrology of the University of Turin.
Protocol presented to the SITO Congress (Società Italiana Trapianto di Organi) 2003, and preliminary data on transplantation Proceedings of the SITO Congress in 2004.
Conflict of interest statement. None declared.
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Accepted in revised form: 30. 9.05
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