GA-CDRC Investigators:
Angela MC. Rose (Principal Investigator), Shelly-Ann Forde, Ian R. Hambleton
Other UWI Investigators:
Patsy Prussia, Cave Hill Campus
External Investigators:
Kenneth George, Ministry of Health; David Corbin, Rudolph Delice, Queen Elizabeth Hospital
Funding Obtained:
2007–2011 BDS $2,000,000
2011–2014 BDS $1,961,823
2014–2017 BDS $1,863,762
2017–2022 BDS $3,106,220
Start Date:
April 2007
End Date:
March 2022
Rationale:
At the turn of the century, it was known from the Chief Medical Officer’s reports that stroke, heart attack and cancer had become the main causes of mortality in Barbados. However, there were few data available on morbidity of these diseases, and further information was needed for the Ministry of Health to make evidence-based decisions towards reducing Non-Communicable diseases (NCDs) in Barbados. Earlier studies had provided evidence for the feasibility of an NCD surveillance system and, under the mandate of the Ministry of Health’s National NCD Commission and the directorship of the Chronic Disease Research Centre, the BNR was started in 2007. This population-based surveillance system comprises three registries: stroke (start date 2008), acute myocardial infarction (acute MI; start date 2009) and cancer (start date 2010).
The aim of the BNR is to collect timely and accurate national data on the occurrence of these three NCDs in order to contribute to their prevention, control and treatment in Barbados.
Methods:
Main data sources for the three registries include the Queen Elizabeth Hospital (Barbados’ single tertiary public hospital), the national civic register, the private hospital and private clinics.
Data are collected prospectively for all stroke and acute MI events diagnosed nationwide by trained data abstractors via active notification. As of 2016, the paper case-reporting forms (CRFs) has been replaced by collection via encrypted tablets into an Epi-Info database. Follow-up information is also collected 28 days and 1 year post event from surviving patients.
For the BNR-Cancer, data are collected retrospectively on all malignant neoplasms as well as CIN III and benign tumours of the brain and CNS by trained data abstractors via ‘hot pursuit’. Data are collected using the International Agency for Research on Cancer (IARC)’s CanReg software (v. 5) on encrypted laptops.
In 2016, the registry added a Quality Control team which reviews the data for accuracy and manages the registry’s databases, security and confidentiality procedures. All registry data cleaning and analyses are performed using Stata version 13 (StataCorp., College Station, TX, USA).
Main Results:
Stroke
There have been approximately 590 stroke events in Barbados every year over the period 2009– 2015, with a little more than half (54%) occurring in women. Crude annual incidence rate (IR) per 100,000 population per year over the 7 years was 213 (95% CI 200 - 225).There was no significant change in IR over this time, other than an increase seen between 2012 and 2013 when it rose from about 200 to over 240 per 100,000, however, this normalized over the next two years. There were approximately 304 stroke deaths per year in 2009–2015. There was a significant increase in crude mortality rate per 100,000 population per year (MR) of over 78% (from 79 to 101) over the 7 year period.
Acute MI
There have been approximately 330 heart attack events in Barbados every year during 2009–2015, with almost half of events (47%) occurring in women. The crude annual IR over the 7 years was 118 (95% CI 98 -139), with no significant change seen over the 5-year period. There were approximately 222 heart attack deaths per year for an overall crude annual MR of 80 (95% CI 67 - 93).
Cancer
In 2008, there were 1204 tumours diagnosed among 1117 persons (567 men; 51%) in Barbados registered with the BNR, for an incidence rate per 100,000 age-standardised (ASIR) to the WHO world population of 305 (95% CI 287–323). The top sites were prostate cancer (ASIR 116), non-melanoma skin cancers (NMSCs; 73) and breast cancer(69). The mean age for patients with cancer was 65 years (63 years for men; 67 years for women). For most tumours (1017; 84%), treatment information was available, and at least one form of treatment was received for 887 (74%) of these. The main initial treatment received (645; 73%) was surgery, followed by hormone therapy (128; 14%). Almost half (498; 45%) of all persons diagnosed with cancer in 2008 had died by the end of 2013, i.e. 5 years post-diagnosis; most (353; 71% of all deaths) within the first 2 years. Median survival was 165 days from initial diagnosis. Most of these deaths (397; 80%) were from cancer and of these, 247 (62%) were caused by tumours of the gastrointestinal tract, breast, female genitalia, and prostate. There were 489 deaths from cancer in Barbados in 2008, for an ASMR of 114 (104–126). Almost half of all cancer deaths were from three sites: prostate (100; 20%), colorectal (66; 14%) and breast (49 deaths; 10%). The highest ASMR was for prostate cancer (50; 40–61), almost twice that for the next highest, breast cancer, at 23 (17–31) and a little over three times that for the third highest, colorectal cancer, at 16 (12–21).
Expected Impact:
The BNR has already been a springboard for several research studies e.g. cost of illness studies for stroke and acute MI, the assessment of stroke treatment and an investigation into ambulance use for stroke patients. The data produced by the BNR influenced the creation of acute stroke and cardiac units at the QEH; and it is expected that future data outputs form the registry will show the impact of the presence of such acute units on outcomes for these disease.
Our continued collaboration with regional and international partners such as the Martinique Cancer Registry and the Centres for Disease Control will improve Cancer Registration locally and in the region.
In addition, the BNR has been instrumental in identifying gaps in patient management and training needs for medical professionals, which led to the creation of the BNR Continuing Educational Seminar Series: two continuing professional education accredited seminars are held annually for health care professionals in a number of areas. Previous seminars have included death certification and the management of stroke, acute MI, and cancers of the male urogenital system, breast, gastrointestinal systems, female genital system, hematological and childhood cancers.
It is expected that data from the BNR-CVD and BNR-Cancer will provide greater opportunities for key stakeholders such as the QEH and the Ministry of Health to improve health care to patients via tailored public health campaigns on the main risk factors and diseases affecting Barbadians, as well as through change in public health policies and legislation.
Next Steps / Future Plans:
The creation of a secure electronic platform for notification of cancer by private physicians is still in the design process while secure storage for the online data capture is completed.
The BNR will continue to increase the capacity of project staff through regional and international training like the North American Association for Central Cancer Registrars (NAACCR) conference and webinar training, AC3 Conference workshops and its collaboration with the IARC Caribbean Cancer Hub.
The BNR will be hosting two Continuing Medical Education Seminars in Stroke Management (October 2017) and Cancer Management Best Practices (November 2017).
