Cayman is launching an island-wide study to determine the prevalence of lupus in the islands.
Dr. Sharon Chambers, a consultant rheumatologist at Doctors Hospital, told an audience at a lupus awareness event last week that the Health Services Authority’s Ethics Committee had granted approval for the study.
She noted that more than 5 million people worldwide are affected by the disease. The number of sufferers in Cayman is unknown, and any estimations locally are based on anecdotal data.
“We expect this data to provide foundation data for lupus care and further research in the Cayman Islands,” Chambers said. “We expect this study to support public health planning and rheumatology development, and to raise awareness of autoimmune diseases regionally.”
The study, which is being funded by Doctors Hospital, began last month and will continue until 28 Dec. this year.
Chronic autoimmune condition
Lupus, the most common form of which is systemic lupus erythematosus, or SLE, is a chronic autoimmune disease in which the immune system creates autoantibodies to attack the body’s tissues. This causes inflammation and damage, often affecting the organs and/or joints of patients.
Chambers, speaking at an annual meeting of the Wings of Hope Lupus Support Group Cayman Islands on 29 May, noted that lupus sufferers have a higher rate of disability and mortality than the general population, and that the disease brings significant social and economic challenges.
She said the objective of the new study is to determine how many people in Cayman were suffering from the disease in 2024, and identify demographic patterns such as age and gender.
This will enable the study investigators to track trends and find clusters.
Chambers said a previous study in 2014 into clusters of the disease in Cayman had detected a cluster of 13 cases in one family.
Having more information about the disease and its prevalence locally will help inform national health policy, insurance coverage and criteria for diagnosing the condition, as well as assist in advancing medical knowledge.
She added that the “potential spin-offs on an international scale” from such a study could be enormous.
“Because, once we have studies done like this and we put publications out there, interest will be attracted to the island,” she said.
“People will be more interested in providing funding when they see we can do a serious study. That includes funding for drug trials, so many things.”
The study, which is a collaboration between the HSA and Doctors Hospital, will involve sending questionnaires to doctors and reviewing medical records, and may also include interviews with clinicians and patients. The survey will be anonymised, so no patients’ names will appear in any results or publications of the findings, and all data collected will be destroyed after five years, Chambers noted.
Chambers is the chief investigator for the study, which also involves Dr. Santiago De Solo, Dr. Delroy Jefferson and Dr. Schadé Stanton of the HSA, epidemiologist Rachel Corbett of the Ministry of Health and Wellness, and nurse Diane Obana of Doctors Hospital. The study is being carried out under the supervision of Dr. Richard Preece, medical director of Doctors Hospital.
All physicians in Cayman will be invited to take part, she said, and she urged anyone suffering from lupus to come forward and participate in the study.
“You’re the ones that will really make this study happen,” she added.
The study results will outline the prevalence of the disease among 100,000 people, the male-to-female ratio of the disease, where most patients with lupus live, and where they receive care for their condition.
The country with the most recorded lupus patients is the United Arab Emirates, with 166.92 cases per 100,000 people. The second and third highest recorded prevalence are both in the Caribbean — Barbados and Cuba, with 163.31 and 149.90 per 100,000 people, respectively.
Study will help make lupus ‘visible’
Compass TV producer Reshma Ragoonath, who is founder of Wings of Hope and a lupus sufferer, said she was glad Chambers and the team behind the study were focusing on this disease.
“It’s a significant step for not only our island, but the region,” she said. “There are so many potential positives that can come out of determining the number of patients with the disease, from added medical support to considerations to shape health policy.
“As a lupus patient, being seen and having the disease recognised in this way can be life changing, and it gives me great hope for the road ahead.
“I encourage lupus warriors to sign up for the study and help make lupus visible.”
For more information, email [email protected].
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