Paediatric Specialist Says Early Detection of Lupus Could Reduce Risk of Irreversible Organ Damage

Routine heart scans, comprehensive kidney testing, and expanded access to specialised diagnostic investigations could significantly improve outcomes for Jamaican children living with systemic lupus erythematosus (SLE), according to paediatric specialist, Dr. Sanjae-Ann Dean.

Drawing on findings from one of the first documented studies of paediatric lupus in Jamaica, and the English-speaking Caribbean, Dr. Dean is urging healthcare providers to recognise the disease earlier and strengthen diagnostic capacity within the public health system to reduce the risk of irreversible organ damage and death.

Speaking at the 16th Annual National Research Conference at the Jamaica Pegasus Hotel in New Kingston, recently, Dr. Dean presented findings from a decade-long review of paediatric lupus cases treated at the Bustamante Hospital for Children.

The research, conducted alongside Dr. Sandrika Young-Parrott and Piseke Scott-Brown, examined disease patterns, severity and outcomes among children diagnosed with lupus between January 1, 2013 and December 31, 2022.

Based on the study’s findings, Dr. Dean recommended that children suspected of having lupus routinely undergo echocardiograms, formal urinalysis and spot urine protein-creatinine testing.

She noted that these investigations can identify potentially life-threatening complications such as pericarditis and lupus nephritis before severe symptoms develop. She also called for greater access to specialised laboratory testing through the Ministry of Health and Wellness, and advocates for larger multicentre studies involving adolescents up to 18 years old to better understand the disease across the region.

Despite the disease disproportionately affecting people of African descent, Dr. Dean noted that very little research has been conducted in Jamaica or the wider English-speaking Caribbean, creating significant gaps in knowledge and clinical guidance.

The study reviewed 11 children diagnosed with paediatric lupus over the 10-year period. Ten of the patients were female and one was male, with ages ranging from 6.8 to 11.6 years and an average age of 10 years.

Because paediatric lupus is rare, with an estimated incidence of 0.3 per 100,000 children, researchers identified patients through hospital admissions and specialist nephrology and rheumatology clinics at Bustamante Hospital for Children.

One of the study’s most significant findings was that Jamaican children often presented differently from what is commonly described in international medical literature. Rather than arriving with joint pain or the classic butterfly-shaped facial rash associated with lupus, many children initially experienced prolonged fever, swollen lymph nodes, loss of appetite and weight loss.

Dr. Dean said these constitutional symptoms should raise suspicion among clinicians evaluating Afro-Caribbean children with unexplained illnesses and warrant repeat assessments when no clear diagnosis is established.

The research also revealed the aggressive nature of the disease in the study population. Between initial presentation and confirmed diagnosis, serious complications increased substantially.
Cases of pericarditis doubled from 36.4 per cent to 72.7 per cent, while pleuritis rose from 9.1 per cent to 27.3 per cent. Indicators of kidney involvement also increased during that period. Five children developed lupus nephritis severe enough to require kidney biopsies, including cases of highly aggressive Class IV nephritis.

Laboratory testing showed severe disease activity throughout the cohort. All patients tested positive for antinuclear antibodies, while nearly every child who underwent anti-double stranded DNA testing also returned positive results. Disease severity scores ranged from six to 42, with an average score of 17.55 at diagnosis, placing most patients in the high or very high disease activity categories.

Although treatment reduced average disease activity scores to 4.71 within one year, three children still developed permanent organ damage and one child died.

Dr. Dean said the findings underscore the urgent need for earlier diagnosis, improved access to specialised investigations and broader research efforts that can ultimately improve survival and quality of life for Jamaican children living with lupus.