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Enlightening Young Minds: A Small Step in the Curriculum, a Giant Leap in Organ Donation—A Survey of 996 Respondents on Organ Donation and Transplantation

2021; Wolters Kluwer; Volume: 105; Issue: 3 Linguagem: Inglês

10.1097/tp.0000000000003403

1534-6080

Abdul Hakeem, Vasanthi Ramesh, Pradez Sapkota, Gokula Priya, Ashwin Rammohan, Gomathy Narasimhan, Mettu Srinivas Reddy, Mohamed Rela,

Renal Transplantation Outcomes and Treatments

BACKGROUND India has an organ donation rate of <1 per million population (pmp).1 Although the last 2 decades have seen an increase in living donor transplant activity with 6772 kidneys and 1313 livers transplanted in 2018 in India, the actual requirement is estimated at 12 578 kidneys and 4173 livers annually (as reported to National Organ and Tissue Transplant Organization 2018).2 The Government of India has laid the legislative framework through the Transplantation of Human Organ Act 1994 and its amendment in 2011, aiming to promote organ donation and transplantation (ODT) and to improve the deceased donor rates.3 The Transplantation of Human Organ Act task force identified a significant gap in the understanding and acceptance of the concept of brain death among healthcare personnel and society at large and made recommendations for improvement. These strategies led to increased donation rates, although limited to some parts of the country, with a minimal overall effect on transplantation rates.1 In India, a great divide is witnessed between the North and South in terms of knowledge, awareness, attitudes, and religious beliefs on ODT as evidenced in studies from these 2 regions.4,5 ORGAN DONATION AND TRANSPLANTATION IN THE MEDICAL CURRICULUM Healthcare professionals play a key role in deceased donor identification, obtaining donor family consent, creating awareness among public, and clarifying myths and misconceptions about ODT, and their effective functioning would have a direct impact on increasing organ donation rates.6 Their early training for these roles could change the current landscape of organ shortage in India. The ODT syllabus was added to the undergraduate and postgraduate medical curriculum in 2018 by the Medical Council of India (MCI) and introduced in 2019. The new syllabus is fairly comprehensive, and its effects will be evident some years later. The MCI curriculum of the undergraduate syllabus includes the basic topics in ODT including brain death, transplant immunology, organs transplanted, and their outcomes in Volumes I, II, and III with subjects, including Physiology, Pathology, Microbiology, Surgery, Forensic Medicine, General Medicine, Pediatrics, General Surgery (Table S1, SDC, https://links.lww.com/TP/B981).7 LIMITED KNOWLEDGE BUT EXCELLENT ATTITUDES AND PERCEPTIONS TOWARD ORGAN DONATION AND TRANSPLANTATION A cross-sectional survey was conducted among 1000 medical students and 200 junior doctors listed at Sree Balaji Medical College and Hospital, a private medical college and university-affiliated hospital in South India, to assess their knowledge, attitudes, and perceptions of ODT, out of which 996 participated. The survey used a 30-point questionnaire, adapted from a survey done previously on medical students and junior doctors in the United Kingdom.8 Out of the 996 respondents (83.0%), 459 (46.1%) were preclinical (Bachelor of Medicine and Bachelor of Surgery 1 and 2 y) students, 453 (45.5%) were clinical (Bachelor of Medicine and Bachelor of Surgery 3 and 4 y) students, and 84 (8.4%) were junior doctors (interns and postgraduates' y 1–3) with the majority being 20–25 years (n = 585; 58.7%), of female gender (n = 621; 62.3%), and of Hindu religion (n = 763; 76.6%). Only 11.9% had previous exposure to transplant. Only 5.0% were registered as organ donors. The majority knew of the organs, tissues, and cells transplanted, such as kidney (89.5%), liver (82.3%), heart (70.0%), and cornea (60.4%) but not of pancreas (21.3%), lungs (32.7%), small intestine (11.3%), bone marrow (47.8%), islets of Langerhans (8.6%), abdominal wall (3.7%), uterus (19.5%), and limb (10.1%), with junior doctors having greater awareness levels (P < 0.001). The fact that kidney (91.5%) and liver (57.1%) could be obtained from a living donor was known to many, but the possibility of live donations of bone marrow (47.0%), pancreas (9.9%), lungs (7.6%), and small intestine (8.7%) was not. This awareness was again higher among junior doctors (P < 0.001) (Table 1). TABLE 1. - Knowledge regarding organ donation and transplantation among preclinical, clinical y, and junior doctors Total respondents (N = 996) Preclinical (MBBS y 1 and 2) n = 459 Clinicals (MBBS y 3 and 4) n = 453 Junior doctors (interns and PGs) n = 84 P Demographics, previous experience in transplant, and status on organ donor register Age <0.001 35 y 12 (1.2%) 0 (0.0%) 0 (0.0%) 12 (14.3%) Gender 0.015 Female 621 (62.3%) 308 (67.1%) 262 (57.8%) 51 (60.7%) Religion <0.001 Hindu 763 (76.6%) 361 (78.7%) 345 (76.1%) 57 (67.8%) Christian 102 (10.2%) 44 (9.6%) 45 (9.9%) 13 (15.5%) Muslim 58 (5.8%) 29 (6.3%) 29 (6.4%) 0 (0.0%) Jain 11 (1.1%) 4 (0.9%) 7 (1.5%) 0 (0.0%) Atheist 11 (1.1%) 4 (0.9%) 7 (1.5%) 0 (0.0%) Others 1 (0.1%) 0 (0.0%) 1 (0.2%) 0 (0.0%) Do not wish to disclose 50 (5.0%) 17 (3.7%) 19 (4.2%) 14 (16.7%) Previous exposure to transplant medicine or surgery? (yes) 119 (11.9%) 24 (5.2%) 72 (15.9%) 23 (27.4%) <0.001 Has any of your family or friend been a transplant donor or recipient? (yes) 66 (6.6%) 32 (7.0%) 22 (4.8%) 12 (14.3%) <0.001 Have you signed up to be an organ donor? (yes) 50 (5.0%) 6 (1.3%) 28 (6.2%) 16 (19.1%) <0.001 Knowledge of organ donation and transplantation Which of the following organs or cells have been successfully transplanted in India? Kidney 891 (89.5%) 403 (87.8%) 413 (91.2%) 75 (89.3%) 0.253 Pancreas 212 (21.3%) 55 (12.0%) 118 (26.0%) 39 (46.4%) <0.001 Liver 820 (82.3%) 381 (83.0%) 366 (80.8%) 73 (86.9%) 0.352 Heart 697 (70.0%) 342 (74.5%) 286 (63.1%) 69 (82.1%) <0.001 Lungs 326 (32.7%) 114 (24.8%) 160 (35.3%) 52 (61.9%) <0.001 Small intestine 113 (11.3%) 28 (6.1%) 65 (14.3%) 20 (23.8%) <0.001 Abdominal wall 37 (3.7%) 6 (1.3%) 21 (4.6%) 10 (11.9%) <0.001 Cornea 602 (60.4%) 243 (52.9%) 290 (64.0%) 69 82.1%) <0.001 Bone marrow 476 (47.8%) 198 (43.1%) 214 (47.2%) 64 (76.2%) <0.001 Islet of Langerhans 86 (8.6%) 28 (6.1%) 58 (12.8%) 0 (0.0%) <0.001 Uterus 194 (19.5%) 70 (15.3%) 106(23.4%) 18 (21.4%) 0.007 Limb 101 (10.1%) 34 (7.4%) 38 (8.4%) 29 (34.5) <0.001 Esophagusa 24 (2.4%) 12 (2.6%) 12 (2.6%) 0 (0.0%) 0.322 Facea 139 (14.0%) 71 (15.5%) 61 (13.5% 7 (8.3%) 0.204 Adrenalsa 69 (6.9%) 19 (4.1%) 50 (11.0%) 0 (0.0%) <0.001 Which of the following organs can be obtained from the living donor? Kidney 911 (91.5%) 424 (92.4%) 410 (90.5%) 77 (91.7%) 0.600 Pancreas 99 (9.9%) 23 (5.0%) 62 (13.7%) 14 (16.7%) <0.001 Liver 569 (57.1%) 203 (44.2%) 294 (64.9%) 72 (85.7%) <0.001 Lung 76 (7.6%) 19 (4.1%) 43 (9.5%) 14 (16.7%) <0.001 Small intestine 87 (8.7%) 7 (1.5%) 53 (11.7%) 27 (32.1%) <0.001 Bone marrow 468 (47.0%) 189 (41.2%) 210 (46.4%) 69 (82.1%) <0.001 Hearta 103 (10.3%) 52 (11.3%) 39 (8.6%) 12 (14.3%) 0.187 Corneaa 244 (24.5%) 87 (19.0%) 147 (32.5%) 10 (11.9%) <0.001 None of the optionsa 15 (1.5%) 6 (1.3%) 7 (1.5%) 2 (2.4%) 0.756 Who do you think has the final word to consent for organ donation in deceased donors? <0.001 Patient (by being on the organ donor register) 234 (23.5%) 116 (25.3%) 87 (19.2%) 31 (36.9%) Next of kin (family)b 490 (49.2%) 222 (48.4%) 219 (48.3%) 49 (58.3%) Transplant physician or surgeon 67 (6.7%) 32 (7.0%) 35 (7.7%) 0 (0.0%) Intensivist taking care of the patient 43 (4.3%) 25 (5.4%) 18 (4.0%) 0 (0.0%) Everyone is presumed donor unless they have signed otherwise 136 (13.7%) 49 (10.7%) 85 (18.8%) 2 (2.4%) Not answered 24 (2.4%) 15 (3.3%) 9 (2.0%) 0 (0.0%) Rejection in a transplanted organ usually means failure of organ or need to remove it? 0.482 Yes 650 (65.3%) 290 (63.2%) 309 (68.2%) 51 (60.7%) Nob 207 (20.8%) 97 (21.1%) 88 (19.4%) 22 (26.2%) Unsure 131 (13.2%) 67 (14.6%) 53 (11.7%) 11 (13.1%) Not answered 8 (0.8%) 5 (1.1%) 3 (0.7%) 0 (0.0%) Which State-run organization in Tamil Nadu coordinates and supervises deceased donor and living donor transplant activities, including distributing organs in a transparent manner by maintaining an online waitlist registry? <0.001 NOTTO 436 (43.8%) 209 (45.5%) 203 (44.8%) 24 (28.6%) MOHAN foundation 144 (14.5%) 59 (12.9%) 73 (16.1% 12 (14.3% ORGAN India 121 (12.1%) 56 (12.9%) 63 (13.9%) 2 (2.4%) TRANSTANb 143 (14.4%) 53 (11.5%) 48 (10.6%) 42 (50.0%) GIFT organ 106 (10.6%) 51 (11.1%) 51 (11.3%) 4 (4.8%) Which Indian state leads the deceased donor organ donation rates? <0.001 Tamil Naduc 469 (47.1%) 183 (39.9%) 210 (46.4%) 76 (90.5%) Telangana 63 (6.3%) 33 (7.2%) 30 (6.6%) 0 (0.0%) Kerala 169 (17.0%) 77 (16.8%) 90 (19.9%) 2 (2.4%) Chandigarh 70 (7.0%) 40 (8.7%) 30 (6.6%) 0 (0.0%) Delhi 132 (13.3%) 70 (15.3%) 60 (13.2%) 2 (2.4%) Maharashtra 64 (6.4%) 37 (8.1%) 23 (5.1%) 4 (4.8%) What is the 1-y and 5-y success rate of liver transplant (percentage of patients alive) in most experienced centers in Tamil Nadu? 0.001 50% and 20% 182 (18.3%) 72 (15.7%) 94 (20.8%) 16 (19.0%) 70% and 30% 363 (36.4%) 173 (37.7%) 169 (37.3%) 21 (25.0%) 90% and 85%b 284 (28.5%) 131 (28.5%) 112 (24.7%) 41 (48.8%) 100% and 90% 90 (90.%) 39 (8.5%) 47 (10.4%) 4 (4.8%) 60% and 0% 36 (3.6%) 19 (4.1%) 17 (3.8%) 0 (0.0%) Spain is the country with the highest organ donation rates (population of Spain is 4.7 crores). The organ donation rate there is 47 donors PMP per y. What do you think is the organ donation rate of India (population 137 crores)? 0.001 0.8 PMPb 192 (19.3%) 79 (17.2%) 70 (15.5%) 43 (51.2%) 4 PMP 435 (43.7%) 182 (39.7%) 232 (51.2%) 21 (25.0%) 47 PMP 276 (27.7%) 138 (30.1%) 122 (26.9%) 16 (19.0%) 470 PMP 46 (4.6%) 30 (6.5%) 16 (3.5%) 0 (0.0%) Do you understand the term BSD and criteria used for BSD testing? <0.001 Yes 444 (44.6%) 162 (35.3%) 236 (52.1%) 46 (54.8%) No 264 (26.5%) 144 (31.4%) 109 (24.1%) 11 (13.1%) Unsure 283 (28.4%) 149 (32.5%) 107 (23.6%) 27 (32.1%) Do you accept that those that are brain stem dead as being truly dead? <0.001 Yes 327 (32.8%) 111 (24.2%) 179 (39.5%) 37 (44.0%) No 401 (40.3%) 201 (43.8%) 170 (37.5%) 30 (35.7%) Unsure 260 (26.1%) 143 (31.2%) 100 (22.1%) 17 (20.2%) Categorical variables are expressed as frequencies (%). The 3 groups were analyzed by χ2 test.aThese are the wrong answers among the multiple choices for the questions.bCorrect answer for the questions.cTamil Nadu was leading organ donation rates during the time of this survey, followed by Telangana and Maharashtra.BSD, brain stem death; MBBS, Bachelor of Medicine and Bachelor of Surgery; MOHAN, Multi-Organ Harvesting Aid Network; NOTTO, National Organ and Tissue Transplant Organization; ORGAN, The Organ Receiving & Giving Awareness Network; PG, postgraduate; PMP, per million population; TRANSTAN, The Transplant Authority of Tamil Nadu. Nearly half (49.2%) the respondents were aware that consent of family/next of kin is required for deceased donation, but only 19.3% were aware of the low organ donation rate in India, which is 0.8 pmp.2 Over half the respondents were unaware of "rejections" in a transplanted organ, with 65.3% marking rejection as "failure of organ" or "need to remove it." The awareness of the term brain stem death (BSD) and the criteria used for BSD testing was advanced among the clinical students (52.1%) and junior doctors (54.8%) when compared with preclinical students (35.3%; P < 0.001). However, 54.9% of the respondents were "not aware" or "unsure" of the term BSD or testing criteria. A third (32.8%) accepted BSD as being truly dead, the rest either did not accept BSD as true death or were unsure of this, particularly the preclinical students (P < 0.001) (Table 1). The attitude towards overall impact of transplant was excellent with 72.5% being happy to donate a kidney to a relative or a friend; 76.7% happy to accept organs in case of organ failure; and 69.0% believed that transplant improves quality of life and survival. The majority was strongly opposed to paid donations, with 54.3% recommending a ban. The attitude was positive toward the need to prohibit "conditional" deceased donation (ie, when a donor organ [or organs] is [are] offered to or possibly withheld from a specific group of recipient) based on ethnicity, gender, etc, with 54.9% agreeing that "directed" donation (ie, when a donor organ [or organs] is [are] directed to a specific person or a nominated individual is given priority) should not be allowed unless based on compassionate grounds (for example, parent to a child in a deceased donor setting). Most medical students and junior doctors (61.2%) had no objection to altruistic donation and would want its legalization in India. Less than half of them (37.4%) stated they would donate their liver (living or deceased) to someone with alcohol- or drug-related hepatic failure. Most would be comfortable asking their patients whether they had signed a donor card (Table 2 shows mean ± SD for Likert scale responses for the 3 groups). TABLE 2. - Attitudes and perceptions of preclinical, clinical y, and junior doctors toward organ donation and transplantation Attitudes and perceptions toward organ donation and transplantation Total respondents (N = 996) Preclinical (MBBS y 1 and 2) n = 459 Clinicals (MBBS y 3 and 4) n = 453 Junior doctors (interns and PGs) n = 84 P It is unreasonable to expect families to consent for organ donation when they are going through profound grief losing their loved ones 3.0 ± 1.1 3.0 ± 1.2 3.0 ± 1.0 3.2 ± 1.1 0.231 If necessary, I would happily donate 1 of my kidneys to a relative or a friend 3.8 ± 1.0 3.8 ± 1.1 3.8 ± 1.0 4.0 ± 0.9 0.234 I will be happy to accept organs in case of me needing a transplant 4.0 ± 0.9 4.0 ± 0.9 4.0 ± 0.8 3.8 ± 1.3 0.123 Though lifelong immunosuppression after transplant has a risk of infections and cancer, I still think that transplantation is worthwhile 3.7 ± 1.0 3.6 ± 1.0 3.7 ± 0.9 4.0 ± 0.8 0.002 Should donation (live donation by an unknown person out of kindness without any financial incentive) be allowed by law 3.6 ± 1.2 3.6 ± 1.2 3.6 ± 1.1 3.9 ± 1.1 0.084 It is illegal to accept money in exchange for organ donation, from living or deceased donor. The main reason being possible exploitation of the poor through sale of their organs. Do you agree that paid donation should be banned in all circumstances? 3.7 ± 1.2 3.8 ± 1.2 3.6 ± 1.1 3.4 ± 1.4 0.014 Some would argue that allowing paid donation improves the quality of 2 lives, that of the donor (financially) and that of the recipient (from organ failure). There are also some that believe that legalizing paid organ donation will stop the illegal trade of organs, which potentially exploits the poor. Given this information, do you still agree with your answer above? 3.4 ± 1.1 3.4 ± 1.1 3.4 ± 1.1 3.6 ± 1.2 0.390 Liver failure following alcohol or recreational drug abuse is one of the indications for liver transplantation. Given this information, I would still consent to donate my liver (living or deceased) for such a transplant 2.9 ± 1.2 2.8 ± 1.2 3.1 ± 1.1 2.4 ± 1.2 <0.001 Recently a next of kin stipulated that the donor organs should only be given to a person of same religion/language/caste. Do you think the brain-dead donor's family have a say on who receives their donor's organs (directed donation) 3.5 ± 1.2 3.5 ± 1.2 3.4 ± 1.2 3.9 ± 1.2 <0.001 I will be comfortable to ask my patient if he/she has signed a donor card 4.1 ± 0.8 4.2 ± 0.8 3.9 ± 0.9 4.4 ± 0.5 <0.001 I am happy with my knowledge on organ donation and transplantation 3.7 ± 1.0 3.7 ± 1.1 3.8 ± 0.9 3.0 ± 1.2 <0.001 ODT should be implemented in the medical student curriculum 4.2 ± 0.9 4.3 ± 0.8 4.0 ± 0.9 4.5 ± 0.5 <0.001 Likert scale responses (strongly agree, agree, neither agree nor disagree, disagree, and strongly disagree) were converted as continuous variable (1–5, with 5 being the best answer). The results are presented as mean ± SD. The groups were analyzed by analysis of variance (ANOVA).MBBS, Bachelor of Medicine and Bachelor of Surgery; ODT, organ donation and transplantation; PG, postgraduate. Although a majority of the medical students and junior doctors (65.2%) were content with the knowledge on ODT, most (84.0%) felt that ODT should be strictly implemented in the undergraduate and postgraduate medical curriculum (Table 2). The reasons for not registering as organ donor are listed in Table S2, SDC, https://links.lww.com/TP/C21. CHALLENGES FOR IMPLEMENTING ODT IN THE CURRICULUM The major reasons behind poor donation rates and donor organ shortage in India are the prevailing myths, ignorance, and religious preconceptions among the nontransplant healthcare community and general public.9 Successful implementation of ODT requires its acknowledgment by doctors and educational institutions and the elimination of obstacles from the society. This is evidenced from 2 different studies from South and North India.4,5 The former reported that 96.0% did not believe organ donation is against religion, whereas in the latter, 63.4% of the students and 72.4% of patients considered organ donation offending their religious beliefs. Comparable geographic differences are also observed for deceased organ donation rates with 1.33 pmp in Karnataka (South India) and 0.05 pmp in Uttar Pradesh (North India), with religious barriers especially evident in rural areas. LIMITATIONS OF THE STUDY The major strength of this survey is its applicability to the Indian medical training system, which constitutes a large, diverse group of medical students and junior doctors, coming from different geographic regions and training programs with minor variations in their curriculum and training. However, until 2019, there was lack of emphasis on ODT education, which is hoped to change with the new curriculum. Despite using a nonvalidated survey questionnaire, it encompasses a wide variety of knowledge, perception, and attitude domains that captures our intended aim. The high response rate is a major strength of the study and avoids the sampling bias. THE WAY FORWARD Based on this survey, we hope that a step in the right direction has been taken by the MCI with undergraduate and postgraduate curricula covering topics of ODT, BSD, and ethical aspects in organ transplantation. Training could furthermore be enhanced with an intensified discussion on organ-specific, transplant terminologies, ethical aspects of organ donation, strategies to overcome organ shortage, aided by, meeting with the organ donors and recipients, visits to transplant centers, and observing transplant operations. Junior doctors need to understand the ODT process—identification of organ donor, BSD testing, donor management, organ allocation, recovery and transport, surgery, and posttransplant treatment. Clinical placement and formal training in counseling will go a long way in increasing deceased donor rates. Many respondents of the survey were "unaware of how and where to register," which indicates an urgent need for wider public education about The National Organ and Tissue Transplant Registry of National Organ and Tissue Transplant Organization, with its pledge registry.10 Pledging should be available as an option when applying for mandatory government documentation like driving license, Aadhaar card, and permanent account number card. India, having the second-largest worldwide living donor transplantation program, will benefit greatly from improved deceased donor rates that may help closing the gap between demand and supply. ACKNOWLEDGMENTS We acknowledge the work by the associates from the National Organ and Tissue Transplant Organization and Vardhman Mahavir Medical College and Safdarjung Hospital—Dr Chaitali Das, DEO Ms Anjali Das, and Tele-counselor Mr Yugaan Verma.