Jan LERUT, Leo ROELS, Francine ROGGEN and Chantal De REYCK, RN,CCTC and the EUROLIVER

European experience on education on organ donation and transplantation The EUROLIVER project A lecture dedicated to the late Mr.H.Tob Jan LERUT, Leo ROELS, Francine ROGGEN and Chantal De REYCK, RN,CCTC and the EUROLIVER

European experience on education on organ donation and transplantation The EUROLIVER project A lecture dedicated to the late Mr.H.Tob

THE ORIGIN OF THE PROJECT

THE ORIGIN OF THE PROJECT

THE ORIGIN OF THE EUROLIVER PROJECT Lack of adequate information about organ transplantation and organ donation in adolescents (up to 85 %) (ROELS 1996-7) Ever increasing gap between patients on waiting lists and transplanted patients 15-20 % constant refusal rate by next of kin even in a country with a high rate of organ donation ( 28 to 30 donors/pmh) Mr.Tobs life saving liver transplant and lack of altruism and communication in youth!

THE CONCRETISATION OF THE EUROLIVER PROJECT EUROLIVER FOUNDATION SENSIBILISATION PROGRAM FOR ADOLESCENTS IN RELATION TO ORGAN TRANSPLANTATION AND DONATION IN BELGIUM

EDUCATIONAL PROJECT FOR ADOLESCENTS IN RELATION TO ORGAN TRANSPLANTATION AND DONATION THE NEED - School-based interventions towards adolescents - Only 5 studies reported during the period 1993-2004 - Knowledge significantly * increases willingness to post-mortem donation decreases specific fears Meier 1999; Reubsaet 2004 * increases willingness to discuss organ donation with family and friends Anantachoti 2001; Slavin 1993

EDUCATIONAL PROJECT FOR ADOLESCENTS IN RELATION TO ORGAN TRANSPLANTATION AND DONATION THE AIM - Raise awareness - Stimulate intentional familial & social discussion - Increase knowledge - Create a positive attitude about organ transplantation AND donation Success of transplantation used in favour of donation!

EDUCATIONAL PROJECT FOR ADOLESCENTS IN RELATION TO ORGAN TRANSPLANTATION AND DONATION THE WORKING MODEL - Problem : refusal rate next of kin (15-20 %) - Behaviour : low-registration as organ donor - Determinant : lack of knowledge and information - Intervention : EUROLIVER school-based education program for adolescents - Implementation : adopt educational program for last year of middle school curriculum one or two hour lesson project

SCHOOL-BASED ORGAN DONATION EDUCATION PROGRAM FOR ADOLESCENTS FRAMEWORK HEALTH EDUCATION INTERVENTION - Behavioural research on adolescents based on * Banduras social cognitive theory (SCT) a particular behaviour is influenced by 3 important factors * positive outcome * negative outcome expectations * self-efficacy * Social outcome expectations * Knowledge about organ transplantation and donation * prior thoughts * communication with other family members * involvement with the subject

EDUCATIONAL PROJECT FOR ADOLESCENTS IN RELATION TO ORGAN TRANSPLANTATION AND DONATION THE WORKING MODEL - Interactive computer program with individualized tailored information - Multi-channel and multi-message worksite - Extensive general information and documentation (flyers, brochures, booklets) - Video-group discussion - Oral contact with health care workers and organ recipients Reubsaet 2004

EDUCATIONAL PROJECT FOR ADOLESCENTS IN RELATION TO ORGAN TRANSPLANTATION AND DONATION THE DESIGN Pre-test evaluation * questionnaire * preparative course(s) Educational activity * two hours presentation * introduction by teacher * lecture by same transplant surgeon THE TESTS * information from recipients THE CONTENT representing all different organs!

EDUCATIONAL PROJECT FOR ADOLESCENTS IN RELATION TO ORGAN TRANSPLANTATION AND DONATION - RESULTS* FLANDERS WALLONY 16(19,6%) 17(52,2%) 16(39,3%) 18(17,5%) 18(13,8%) Sexe F/M 52.6%, 47.4% 55.8%, 44.2% Belgian 97.9% 96.9% Age: Religion Cath. 17(43,8%) 56.7% 78.1% Laic 36.7% 8.5% Other 4.5% 8.9% Responses 75% 25% * based on analysis of the first 1000 questionnaires eight questions highlighted

EDUCATIONAL PROJECT FOR ADOLESCENTS IN RELATION TO ORGAN TRANSPLANTATION AND DONATION - RESULTS Are you well informed about organ donation and transplantation? WELL INFORMED 12.8% / 11.2% INSUFFICIENTLY INFORMED 80.8% / 83.9% NOT INFORMED 6% NO INTEREST 4.5% Which are your information sources? MEDIA TELEVISION 80,7% / 72,8% 74.7% / 66.1%

EDUCATIONAL PROJECT FOR ADOLESCENTS IN RELATION TO ORGAN TRANSPLANTATION AND DONATION - RESULTS Are you in favour of organ donation? YES 87.3% / 82.0% YES but RESTRICTION/HESITATION 44.2% / 27.2% NO 3.6% / 6.4% NO OPINION 9.1% / 11.6% Would you give your organs? YES 68.1% / 76.3% YES but RESTRICTION/HESITATION 36.4% / 21.4% NO / YES 15.7% / 10.7% NO 6.3% / 8.5% NO OPINION 9.9% / 4.5%

EDUCATIONAL PROJECT FOR ADOLESCENTS IN RELATION TO ORGAN TRANSPLANTATION AND DONATION - RESULTS Would you agree with donation of a family member? YES 54.8% / 69.1% YES but RESTRICTION/HESITATION 23.2% / 32.7% NO/YES 16.8% / 13.8% NO 13.8% / 5.8% NO OPINION 14.6% / 11.2% Are you aware of donor registration? YES NO HESITATION 15.5% / 8.0% 13.5% / 17.2% 57.2% / 52.1% ALTHOUGH > 90% WAS AWARE OF ORGAN SHORTAGE!

EDUCATIONAL PROJECT FOR ADOLESCENTS IN RELATION TO ORGAN TRANSPLANTATION AND DONATION - RESULTS Are you aware of brain death diagnosis? YES NO NOT AWARE 37.9% / 46.0% 14.5% / 6.3% 46.8% / 47.8% ONLY 19.4% / 14.1% GAVE CORRECT DEFINITION! Are you aware of a law on organ donation? YES NO NOT AWARE 56.1% / 58.5% 4.1% / 2.2% 39.3% / 38.8% ONLY 20.3% / 32.1% KNEW THE EXACT CONTENT!

EDUCATIONAL PROJECT FOR ADOLESCENTS IN RELATION TO ORGAN TRANSPLANTATION AND DONATION - CONCLUSIONS Organ donation is a known item but information about content of transplant law and meaning of brain death greatly lacks Television seems to be the channel to spread information but school education should fill the information gap Brochures and flyers have an overrated impact in awareness campaigns The opinion of the adolescents reflects the organ donor refusal rate in Belgium

THE EUROLIVER PROJECT THE PACKAGE Preparatory courses educational luggage Didactic map CD-Rom adapted to the language of adolescents Educational one day event for middle school aged Educational events for MARLISE BINDER

THE PROJECT TEACH THE TEACHER Info sessions for teachers Biology Religion Ethics and philosophy Social activities or Social life keys 21

THE PROJECT THE DIDACTIC MAP 22

THE PROJECT THE CD-ROM IN TWELVE LANGUAGES INCLUDING CHINESE AND ARABIC!

TRANSPLANT - THE CD-ROM PARALLELLISM between SPACE CONQUEST and TRANSPLANTATION

SPACE CONQUEST 1961 12 april 1962 20 february John GLENN 1968 25 december Youri GAGARIN 1 fois AROUND the moon 1969 21 juillet Neil ARMSTRONG 1 time feet ON the moon!

TRANSPLANT CONQUEST 1951 renal transplant 1953 lung transplant Thomas E. STARZL 1966 pancreas and intestine transplant James HARDY 1963 liver transplant Joseph MURRAY Richard LILLEHEI 1967 heart transplant Christiaan BARNARD MEDIATISATION!!!

TRANSPLANT HISTORY The human dream from COSMAS and DAMIAN to BARNARD to the HERRICK brother twins

TRANSPLANT HISTORY 1902 1951 1954 E.ULLMANN KUSS

BASIC EXPLANATION - IMMUNOLOGY

6 DAUSSET VAN ROOD TERASAKI JANSSEN JEAN RUE de l EGLISE 12 6661 MONT JANSSEN JEAN RUE de l EGLISE 24 12 5530 6661 MONT JANSENS

BASIC EXPLANATION ORGAN DONATION TRANSPLANTATION IS A REALITY THAT WILL ALWAYS HAVE TWO FACES, TWO SIDES

ORGAN DONATION IN EUROPE Untapped potential Postmortem don/pmp 2003

ORGAN DONATION - EUROTRANSPLANT I am a multiorgan donor

ORGAN DONATION - EUROTRANSPLANT 30 25 LEIDEN 20 15 10 5 Refusal family 15-20 % 0 19 ET 92 9 93 9 94 9 95 9 96 9 97 9 98 9 99 0 00 0 01 0 02 0 03 1 1 1 1 1 1 1 2 2 2 2 Austria Netherlands Belgium/Lux. ET-average Germany Explicite Organ donors

ORGAN DONATION - LOGISTICS

TRANSPLANTATION - RESULTS + 3 MO LATER!

TRANSPLANTATION - RESULTS

TRANSPLANTATION - RESULTS

TRANSPLANTATION RESULTS NEVER GIVE UP! 1988 1999 2012

TRANSPLANTATION - RESULTS EDUCATION OF PATIENTS AND OF THEIR FAMILIES

TRANSPLANTATION - THE NUMBERS

TRANSPLANTATION THE FUTURE SINGAPORE BIOPOLIS REGENERATIVE MEDECINE

THE PROJECT TEACH THE CITY Educational project city based approach encompsssing all philosophical and religious bareers Organized with the help of service clubs Soroptimist International Rotary WHO IS IN FAVOUR OF DONATION?

THE PROJECT TEACH THE CITY TILL NOW > 60.000 16 to 18 yrs ADOLESCENTS REACHED!

THE PROJECT TEACH THE CITY Lectures by transplant professional(s) Whitnesses from transplant patients all organs considered donor family members Explanation about brain and cardiac death by neurologist All presentations adapted to adolescent language Q&A 45

THE PROJECT TEACH THE CITY Lectures by transplant professional(s) Whitnesses from transplant patients all organs considered donor family members Explanation about brain and cardiac death by neurologist All presentations adapted by professionals to adolescent language Interactive,structured Q&A Attendance 500 to 1000 students 46

THE PROJECT - TEACH THE STUDENTS

THE PROJECT - LIFE and ART ACTIVITY

THE PROJECT TEACH THE PARENTS Evening info sessions for parents Opting in documents made available 49

SCHOOL-BASED ORGAN DONATION EDUCATION PROGRAM FOR ADOLESCENTS - CONCLUSIONS The EUROLIVER PROJECT is a succesful project Designed specifically for adolescents, Set up with the help of many volunteers and transplant recipients, Endorsed by a multilingual, adapted CD-rom, Reaching important societal impact and Using the successes of transplantation to pass the message to tens of thousands that organ donation is really useful for our modern multicultural society

EUROPEAN EXPERIENCE ON EDUCATION ON ORGAN DONATION AND TRANSPLANTATION THE EUROLIVER PROJECT