Introduction:
Deceased organ donation (DOD) rates in India are amongst the lowest worldwide. There is limited in-depth survey of knowledge, attitude and practices about DOD in Indian settings. This study will help in understanding the barriers to DOD in a nation where deceased donation is scarce compared to living donation.
Methods:
This was a cross sectional national survey designed in a google sheet, and validated by a pilot survey for reproducibility of survey. Anonymity was maintained as collecting email address was disabled. Also, single response and no edits allowed were implemented. The survey was sent by Whatsapp among healthcare personnel as well as non medical people across India. The time of data collection spanned over a 6 month period from 4 Feb 2024 till 4 Aug 2024. The responses locked were analyzed by SPSS 16 software.
Results:
Overall, 1228 responses were registered, of which the majority were from health care professionals (57.8%). Age group 30 to 40 constituted 42.9% of individuals. Among the non-healthcare group a surprising 26.9% showed indecision, and 10.6% denied for accepting a deceased organ even if their organ fail in the future. However, 79.9% showed willingness to donate an organ. On evaluating the geographic distribution, we observed that Maharashtra(88.4%), and Telengana (76.66%) had maximum willing donors. Among the top response regions, the maximum un-willingness to be an organ donor comes from Gujarat(29.3%), followed closely by Delhi-NCR region(28.3%), and UP(22%). There was no difference between male and female for either accepting a deceased organ(63.7% vs 55.56%; p-value = 0.198) or being an organ donor( 77.80% vs 77.78%; p-value = 1). An interesting observation in our study was that despite having a high unwillingness to donate in Gujarat, the cadaveric organ transplantation rates are high . This is perhaps due to the involvement of transplant coordinator at very early stages of patient assessment and subsequent brain death declaration resulting in an effective communication and rapport with the family. Among perceived barriers to donation, majority said lack of knowledge about the process(40.6%), never being serious(26%) and would have donated if had heard success story(22.9%) were the major factors. Majority of medical response makers agreed that knowledge of donation should be incorporated during undergraduate training(88.8%), post-graduate(77.1%), and short training module(87.8%). Also, 60% preferred opt-out system for Indian setting. Amongst physicians non-nephrologists fared worse in comparison to nephrologists in relation to knowledge around apnea test (54.1% vs 16%), acceptability of hepatits B(74% vs 15.6%), hepatitis C(54% vs 12%), sepsis(67.8% vs 63.3% ), diabetes(63% vs 57%). A major point of concern was the lack of knowledge among even practicing nephrologists when it comes to acceptability of diabetic donors, donors with sepsis. Among the nephrologists who participated in the survey, only 31% nephrologist were involved in DDKT, and 25% had machine perfusion knowledge. Only an abysmal 6% nephrologists were actively involved in initiating brain death certification.
Conclusions:
In this survey we demonstrated that both medical and non medical individuals have sub-optimal knowledge about organ donation process. The practice patterns amongst real world nephrologists is worrisome as witnessed by poor acceptibilty of Hepatitis B / C and diabetic donors. Healthcare education needs a major overhaul. Sensitization towards organ donation should be inculcated at the school and graduate level in academic curriculum. Anecdotes and success stories of real world transplant recipients were deemed to be the best way to improve organ donation in the country.
I have no potential conflict of interest to disclose.
I did not use generative AI and AI-assisted technologies in the writing process.