Organ donation in a developing Caribbean country: a single centre experience in Trinidad and Tobago

Hassina Mohammed¹, David Paredes², Loren De Freitas³

¹ Anaesthesia and Intensive Care Department, Eric Williams Medical Sciences Complex, North Central Regional Health Authority
² Associate Professor Surgery Department, University of Barcelona
³ Independent researcher

Corresponding author:
Dr. Hassina Mohammed
Anaesthesia and Intensive Care
Eric Williams Medical Sciences Complex
North Central Regional Health Authority
Email: [email protected]

DOI:
DOAJ: 20af113117094f9687073f1f4042091f

Copyright: This is an open-access article under the terms of the Creative Commons Attribution License which permits use, distribution, and reproduction in any medium, provided the original work is properly cited.

©2022 The Authors. Caribbean Medical Journal published by Trinidad & Tobago Medical Association.

ABSTRACT

Objectives

The National Organ Transplant Unit was established in 2006 with the aim of providing renal and corneal transplants services. This study assessed the current state of the National Organ Transplant Unit and the organ donation experience at a single centre intensive care unit in Trinidad.

Methods

A review of legal, human and material resources and a retrospective chart review of the current status of organ donation and transplantation in Trinidad and Tobago was conducted. Data were collected from medical records of deceased donors for the period January 2006 to December 2020. The organ donor experience in the Adult Intensive Care Unit at a tertiary care hospital in Trinidad was also evaluated. Data were collected from medical records of all patients in the adult intensive care unit for the period October 2016 to December 2016.

Results

Trinidad and Tobago has four donor hospitals, one transplant centre, and one surgical team consisting of three surgeons, approximately 100 trained Transplant Procurement Managers and one trained laboratory technician. The deceased donation rate was 0.77 donor per million population in 2006, peaked in 2014 at 3.85 and then remained at 0.77. Donor potentiality for the adult intensive care unit was 66.7% with a donation rate of 5.3%.

Conclusions

Organ donation in Trinidad and Tobago mostly relies on living donors. Despite increases in organ donation and conversion rates, the country has not yet achieved self-sufficiency. The implementation of a taskforce dedicated to developing action plans to improve organ donation services may assist the country in achieving self-sufficiency.

Introduction

The Caribbean Renal Registry has identified diabetes mellitus and hypertension as the major causes of Chronic Kidney Disease (CKD) and End Stage Renal Disease (ESRD) in the Caribbean. ¹ In Trinidad and Tobago, Chronic Kidney Disease is listed as the fourth leading cause of death across all age groups, with the highest percentage change of 38.5% from 2007 to 2017 [2]. A similar increase was seen in the years of life lost in 2017 with a percentage change of 28.3%. ² Anecdotal reports from the Trinidad and Tobago Ministry of Health noted that an estimated 1,800 patients received dialysis in 2014 while 350-400 patients were likely to require some form of renal replacement therapy in the near future. ^{3, 4}

However, renal replacement therapy significantly decreases the quality of life of patients, with an average life expectancy of five to ten years and an increase in cardiovascular and cerebrovascular incidents.^1,5,6 Furthermore, renal replacement therapy has significant socioeconomic implications with dialysis costing an estimated US$ 20,000 per patient per year.  ^1,5,6

Patients diagnosed with end stage organ failure often benefit from organ transplantation.⁷ However, the global shortage of available organs for transplant is unable to meet the demand. ^7,8 Compared to developed countries, organ donation and transplantation in developing countries is less established.⁹ Most developing countries having less than ten donors per million population while many developed countries have four to five times that number. ⁹  Factors such as a poorly structured and developed donation and transplantation system, health professionals’ awareness of potential donors, economic constraints, limited education, donation public awareness and some religious misconceptions influence this outcome. ^9,10 Furthermore, living donor donations are significantly more common in developing countries. ⁹

In Trinidad and Tobago, the first organ transplantation occurred in 1988, which was a kidney transplant from a living donor. ¹¹ The National Organ Transplant Unit (NOTU) was instituted in 2006 after the proclamation of the Human Tissue Transplant Act in 2000 and acceptance of regulations in 2004.¹² The National Organ Transplant Unit (NOTU) was formally opened in 2006 with the aim of providing renal and corneal transplant services to patients living with End Stage Renal Disease (ESRD) and irreversible corneal disease. A deceased donor programme was subsequently launched in 2007 and the first kidney retrieval from a deceased donor was performed in August of the same year with 100 transplants achieved by February 2013. However, living donations remain the main type of transplant performed in Trinidad and Tobago.

Since 2010, through the Madrid Resolution, the World Health Organisation has promoted self-sufficiency in organ donation. Self-sufficiency is defined as “fulfilling the transplantation needs of a population by using the resources obtained from within that population but not excluding opportunities of regulated and ethical regional organ sharing and cooperation”. ¹³ This would require a minimum number of 0.5% donors per total country deaths. These concept of self-sufficiency, has been extensively discussed in the Madrid Resolution and Working groups and has been developed by Marti Manyalich more than 12 years ago, after analysing and comparing the total death in a country, the total number of donations and the needs for transplantation (Personal Communication). Applying these results, it was noted that the countries that have highest absolute number of donors also had an index close to 0.5% donors per total country deaths as was the case of Spain, Croatia, Portugal, USA, France and Australia (Personal Communication, Supplementary-Table 1)

Deceased organ donation is considered the most essential component of achieving national self-sufficiency. ¹³ In order to facilitate deceased organ donation and assist in achieving self-sufficiency, a Critical Pathway for Organ Donation was published as a consensus document from the Madrid Resolution. This pathway is a systematic tool outlining the process used to identify opportunities for deceased organ donation. ¹⁴ (Figure 1).

Quality indicators to evaluate organ donation programmes

The Organ Donation European Quality System (ODEQUS) Project was developed to determine quality indicators (QI) with the aim of evaluating the organ donation programmes performances, both living and deceased, at the hospital level. ^{15, 16} Some of the quality indicators are described as follows. Brain death identification is determined by the number of deaths of patients with a devastating cerebral injury or lesion who were declared brain dead compared to the total number of deaths of patients with devastating cerebral injury or lesion. ¹⁶ The expected result is 50%. The effectiveness of family consent has an expected result of 90% and is calculated using the number of families who consented to organ donation. ¹⁶

The donation rate (DR) is measured as a ratio in donor per million population (pmp). ¹⁷ It is internationally recognised as the metric unit of organ donation but it is not the most ideal tool to identify the efficiency of a donation programme as it disregards the potential for deceased donation.^17,18 Another parameter is the donor conversion index (DCI). This assesses the potential for deceased organ donation and evaluates the efficiency of the donation programme. ^17,18  It uses the absolute number of actual deceased donors (ADD) in relation to the mortality rate for selected International Classification of Diseases-10 (ICD-10) codes associated with brain death. ¹⁸  For deceased donation, the conversion rate in donation after brain death donor (DBD) evaluates the efficiency and outcome of the donation programme. The expected result is 75% and uses the number of actual DBD donors from number of eligible donors.

Other parameters include organ donor potentiality and donation process effectiveness. Organ donor potentiality refers to the expected number of brain death patients of a given hospital while the donation process effectiveness is the ability to convert brain death patients into actual donors. ^14,15  Understanding and identifying the organ donor potentiality and the effectiveness of the donation process are useful means of assessing whether the hospital is able to identify potential donors and successfully convert potential donors to actual donors.

Lastly, the Joint Action Achieving Comprehensive Coordination in Organ Donation (ACCORD) trial developed a donation after brain death pathway that highlights the percentage loss of patients per parameter assessed along the pathways and highlights areas of deficiency for improvement. ¹⁹

Organ donation in Trinidad and Tobago

The Donation and Transplantation Institute (DTI) in Spain created the SEUSA (Spanish, European and American) programme to assist other countries or institutions to develop self-sufficient transplant systems. ²⁰ This programme is modelled on the best practices from Spain, Europe and the United States and was implemented in Trinidad and Tobago in 2010 under the collaborative support of the DTI Foundation and the NOTU of Trinidad and Tobago. ²⁰ This initiative was successful in improving the deceased donors per million population from 0.76 to 3.1 for the period 2010 to 2015 as well as increasing access to education and training programmes for the local transplant procurement managers in the various hospitals and NOTU. ^{17, 20}  However, despite this increase, Trinidad and Tobago has not yet achieved the goal of self- sufficiency.

Methods

Study Design

This was a retrospective design composed of two phases. Phase 1 was a review of legal, human and material resources available and a retrospective chart review examining the current status of organ donation and transplantation in Trinidad and Tobago. Phase 2 used a retrospective design to evaluate the organ donor experience in the Adult Intensive Care Unit (AICU) at a tertiary care hospital in Trinidad.

Data collection and analysis

Phase 1: Data were collected from the medical records of deceased donors at the National Organ Transplant Unit for the period January 2006 to December 2020. Data were used to determine the donation rate, donation conversion index and whether or not Trinidad and Tobago had improved in achieving donor self-sufficiency.

Phase 2: This study was conducted in the Adult Intensive Care Unit of a tertiary level hospital in Trinidad, during the period October to December 2016. The study included all AICU admissions and all patients who died after brain damage caused by any neurological diagnosis. The AICU admission records were used to identify the patients who died during the stipulated period, the names were noted and the medical records requested from the Medical Records Department.

The organ donor potentiality, the donation rate, donor conversion index and the donation process effectiveness, conversion rate in DBD donors and effectiveness of obtaining family consent, were calculated. All data was de-identified prior to data analysis and descriptive statistics were used to analyse the data in both phases.

Approval for the study

The study was conducted as an audit for the transplant services and thus formal ethics committee approval was not required. Approval was obtained from the Medical Director of the NOTU, the Medical Director of the hospital and the Head of Department of Anaesthetics/AICU.

Results

Summary of the organ donation and transplant system in Trinidad and Tobago

Legal system: The legal system in Trinidad and Tobago requires informed consent for organ donation.

Hospital and Human Resources: Trinidad and Tobago has a population of approximately 1.4 million people. There are currently four donor hospitals, one transplant centre, one nephrologist, one surgical team consisting of four surgeons, approximately 100 trained Transplant Procurement Managers (TPM) and one trained laboratory technician. There are approximately 31 active TPM made up of 25 doctors and six nurses mainly from the Intensive Care/Anaesthesia and Emergency sub-specialities. The donor hospitals are the main government hospitals in Trinidad: Port of Spain General Hospital, San Fernando General Hospital, Sangre Grande Hospital and Eric Williams Medical Sciences Complex which is also the transplant hospital. Due to the lack of neurosurgical support in Tobago, possible donors are transferred to Trinidad for management.

The national health budget for the year 2019-2020 was approximately US$1 billion, of which the total annual budget for donation and transplantation was US$ 100,000. ²³ All TPM staff, the nephrologist and three surgeons are volunteer staff with the NOTU. Currently the TPM and donor hospitals do not receive any reimbursements nor is there a budget for public campaigns. Renal transplantations from both living and deceased donors are performed as well as corneal transplants using imported grafts. An imported graft from the United States of America cost between US$ 1800-US$ 2300 depending on whether full thickness graft or endothelial grafts are required. The cost of a corneal graft in the private sector is approximately US$ 6000.

Current status of deceased organ donation in Trinidad and Tobago (2006-June 2020)

During the data collection period, there were a total of 27 donors after brain death (DBD) with the first actual deceased donation occurring in 2007. The highest number of deceased donors were registered in 2014 (n=5) with two registered in 2020 (Supplementary Figure 1).

The majority of the donors were male (66.7%). The main age group was 16-30 years (44.4%) and trauma accounted for 59.3% of the causes of death. The trauma category included road traffic accidents, gunshot wounds and motor vehicular accidents. The deceased donors’ characteristics are shown in Table 1.

Table 1: Characteristics of the deceased organ donors in NOTU for the period 2006 – 2020

During the period January 1^st 2006 to December 31^st 2020, there were 195 renal transplants performed. Of these, 149 transplants were from living donors and 46 transplants were from 27 DBD donors. Six locally retrieved corneal transplants were performed from three deceased donors during the period 2017-2018. The deceased donation rate was 0.77 donor pmp at the beginning of the programme, peaked at 3.85 in 2014 and subsequently remained at 1.54 donor pmp in 2020. The average DBD donation activity was 1.48 pmp with the highest in 2014 (3.85 pmp) with equal number of transplants from living and deceased donors. (Supplementary Figure 2). The evolution of the donor conversion index has a similar trend of the deceased donation rate with 0.01% at the beginning of the programme, peaking with 0.04% in 2014 and remaining at 0.01% in 2019 (Table 2). Table 2 also outlines the donor per total death percentage for each year from 2006 to 2019 evaluating if Trinidad and Tobago had achieved donor self-sufficiency.

Table 2: Donation Conversion Index (DCI) for 2006 to 2019

Over a ten year period, from 2006 to 2016, seven kidney grafts were not utilised.  The most common factor contributing to the loss of the graft was noted to be vascular technicality. The reasons for the loss of the renal grafts for transplantation are stated in supplementary table 2. Organ Donation Experience at a single tertiary centre Adult Intensive Care Unit

In 2016, there were three actual deceased donors from the tertiary centre. The AICU had 94 deaths of which thirty-eight were from ICD-10 codes for severe neurological criteria resulting in a DCI of 7.9%. The total number of deaths for the tertiary institution was 1087 resulting in a DCI of 0.3%.

During the study period, October to December 2016, the tertiary hospital had a total of 574 beds with nine Adult Intensive Care Unit beds and 24 neurosurgical beds. Mechanical ventilation was only available in the AICU. The total number of hospital deaths recorded was 271.

During the same period, there were 19 deaths recorded in the AICU (supplementary table 3). Thirty-two percent (N=6) of the deceased patients were evaluated as being potential DBD donors, following the critical pathway definition. Of these six patients, two had medical contraindications (Human Immunodeficiency Virus and malignancy) and two had severe cardiovascular instability resulting in death before brain death declaration could be performed. The number of eligible DBD donors represented only 33% (N=2).  One family refused donation resulting in one actual donor (Figure 2).

Donor potentiality was calculated based on the number of potential donors (expected brain dead patients) compared to the possible donors. Therefore, as there were four potential donors and six possible donors, the donor potentiality for the AICU was 66.7%. The data collected were also used to calculate the donation rate for the DBD pathway (Figure 3). In this figure, of the 19 patients who died in the AICU in the time period, only one patient was converted to an actual donor resulting in a donation rate of 5.3%.

For the three month period, the donor conversion index was 16.7% for the AICU, using an ADD of one and a mortality from selected causes associated with brain death of six (possible donors) and 0.4% for the hospital. The quality indicators assessed for the tertiary institution were the brain death identification, which was calculated as 33.3% (eligible donors out of possible donors); the family consent using the number of opposition out of the number of families approached (50%) and the conversion rate in DBD donors, there were two eligible donors and only one was converted to actual donor, the conversion rate was 50%.

Figure 1. Critical Pathway for deceased organ donation

Figure 2: Flowchart showing the potential donation after brain death in the Adult Intensive Care Unit (AICU) for the period October to December 2016

Figure 3: Donation after brain death pathway for AICU for the period October-December 2016

Discussion

This study explored the current state of organ donation in Trinidad and Tobago as well as the organ donation experience of a single hospital in Trinidad. In this study, despite a donation potentiality of 66.7%, only 5.3% of potential donors became actual donors. In comparison, in Canada, 17% of potential donors were converted to actual donors; however, in both instances there is potential to increase the deceased donor donation rate. ²⁴ Countries may benefit from focusing efforts on managing the pool of potential donors in order to increase donation rates.

The study findings showed that Trinidad and Tobago results significantly less than the 0.5% donor per total death to achieve self-sufficiency as proposed by the World Health Organization. In 2014, the country’s most successful year for donor conversion, the highest percentage donor per total death was 0.05% indicating that the country required approximately ten times more activity to obtain self-sufficiency. Additionally, the donor conversion index (DCI) showed similar findings with a maximum of 0.04%. Despite an increasing donation rate, the donor conversion index remained low potentially as a result of the steady increase in the mortality rate. Compared to a multi-country European study, the donor conversion index for Trinidad and Tobago was significantly less than the lowest donor conversion index, which was seen in Romania (0.3%). ¹⁷ The trend of the donor conversion index indicates that the transplant programme has experienced an increase in efficiency but the low index indicates that the system still requires improvement.

In the single tertiary hospital, the donor conversion index was 0.3% compared to the country’s index of 0.04% in 2016. This indicated that the tertiary hospital had a more efficient system of converting potential donors to actual donors. However, based on the quality indicators, the brain death identification, conversion rate in DBD donors and family consent were lower than the expected results recommended by Organ Donation European Quality System. ¹⁶ This correlates with the DBD pathway findings which identified the areas for improvement as brain-dead suspicion (72%), brain-dead testing (60%) and obtaining consent (50%). Patient referral and Family approach were ideal with 0% losses.

During the DTI training in Trinidad, criteria were developed to assist local staff with the early detection of potential donors and the subsequent referral of patients to the TPM team. The Deceased Alert System (DAS) was implemented in Phase 3 of the SEUSA programme. ²⁰ The Trinidad and Tobago’s DAS used clinical triggers with the aim to identify 100% of potential DBD cases: patients should have a Glasgow Coma Scale less than 5, they should be Intubated and Ventilated and diagnosed with Encephalic lesions: GIVE. This criteria is summarised as the GIVE criteria and has been adapted and is used to assess patients with Severe Neurological Damage (SND) for DBD donors. ^19,25 The combination of active detection, timely identification and referrals to the TPM at the point of clinical suspicion of brain death before brainstem testing, may decrease the time available for evaluation and optimization of the donor. ^26-31 Therefore, it is recommended that protocols outlining the GIVE criteria for referral should be implemented for Emergency, Neurosurgical, Medical and AICU staff.

From the organ donation experience in the intensive care unit, it can be seen that two of the potential donors were lost due to severe cardiovascular instability. The protocol for management of the potential donor is often disregarded and not used uniformly in donor centres. TPM and AICU staff may benefit from regular practical training on donor management protocols which may enable them to efficiently anticipate, identify and correct the physiological changes that occur during brainstem dysfunction and death. ^32-38

Currently, the organ donation system in Trinidad and Tobago relies on an opt-in informed consent system which may negatively affect refusal rates. Another approach is that of presumed consent. In this approach citizens are considered organ donors unless they explicitly opt out of being an organ donor.^39,40 However, the implementation of presumed consent would firstly require education of the population in order to increase organ donation awareness. The option of presumed consent is a consideration for the future of the programme.  However, it would be more important to introduce changes in the health professionals’ awareness about incorporating donation as an integral part of end-of-life care, in order to improve donor referral and early possible donor identification.

Currently, quality assurance programmes are needed to assess the programme via internal and external audits. ^41,42 Each donor hospital uses different documentation for the various steps in the donation process. The lack of data for the number of potential and eligible donors and reasons for non-conversion was not available within each hospital. The data from the private sector for organ and tissue transplants are not reported to NOTU, therefore these figures are unknown for reporting of organ and tissue activity. These factors make auditing of the programme difficult. Standardised documents and a dedicated system for documentation may be beneficial in developing an efficient system in which to audit the programme.

There were several limitations to this study. The accuracy of data gathered was subject to the completeness of the medical records and the legibility of the authors.  Documentation in patient notes was not uniform across the medical institutions resulting in difficulties for extracting data from the records at the NOTU. There was also limited access to the Ministry of Health’s registry for updated statistical data including cost of renal replacement therapy versus cost of renal transplantation (donation, retrieval, transplantation and post-operative management).  The donor potentiality was assessed in a single tertiary hospital and therefore it would be difficult to be generalizable across the entire country, it gives an idea about the lack of adequate referral and donor identification, in spite of the number of TPM trained health professionals around the country. The limited mortality causes census data resulting in the calculation of the donor conversion index to use the mortality rate of all causes and not the selected ICD-10 codes associated with brain dead. This may lead to an underestimated DCI especially in comparison to the single centre data which used selected ICD-10 cases.

Conclusion

Trinidad and Tobago rely significantly on living donors to reduce its waiting list time. Even with an increase in donor pmp and conversion rates, there is a significant discrepancy between the organ donation potentiality and donation rate.

A careful analysis of organ donation in other donor hospitals, inviting TPM professionals working on those centres, including literature review for careful identification of the key aspects needed at the various levels in order to enhance of the deceased donor programme. A formal taskforce including TPM professionals, intensive professionals and NOTU group, for developing and action plan will greatly benefit the organ and tissue donation programme of Trinidad and Tobago in achieving self-sufficiency.

Competing interests: none to declare

Funding: none

Ethical approval: obtained from the head of department and medical director

Availability of data and materials: The corresponding author can be contacted for data

Authors’ contributions: HM contributed to the design of the study, data collection, analysis and interpretation, revision of the intellectual content and the writing of the article. DP contributed to data interpretation, revision of the intellectual content and general supervision of the research. LD contributed to data interpretation, writing of the article, administrative support and technical editing. All authors approved the final version of the manuscript.

Acknowledgments

The authors would like to thank Dr. Lesley Roberts-Villaroel, Mrs. Heather Johnson, Dr. Vishal Jaikaransingh, Dr. Martí Manyalich, Dr. Nuria Masnou Burrall and all the staff at the National Organ Transplant Unit and the Donation & Transplantation Institute for their support and assistance with this project. 

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