Premature Death Rates Among Black Women With Sarcoidosis

A new study conducted by researchers from Boston University has found that sarcoidosis accounts for 25 percent of all deaths among women in the Black Women's Health Study who have the disease. The study is the largest epidemiologic study to date to specifically address mortality in black females with sarcoidosis.

Results of the study were presented at the ATS 2012 International Conference in San Francisco.

The exact cause of sarcoidosis, which causes inflammation in the lungs, lymph nodes, liver, skin and other tissues, are unknown. The disease typically begins between the ages of 20 and 40 years, and is more likely to affect individuals who have a close blood relative with the disease. Sarcoidosis is often associated with debilitating lung illness, including pulmonary fibrosis, a life-threatening condition in which fibrous tissue develops within the lungs. While all ages and races can develop sarcoidosis, in the United States, black women have a higher incidence of the disease, and tend to have a more severe course and higher mortality rates.

"Despite the disproportionate morbidity and mortality of sarcoidosis in black females, few studies have specifically addressed causes of death in this population," said study lead author Melissa Tukey, MD, pulmonary and critical care medicine fellow at Boston Medical Center.

To conduct their analysis, the researchers used data from the Black Women's Health Study, a longitudinal study that enrolled 59,000 African-American participants aged 21-69 when the study was initiated in 1995. During follow-up through 2008, demographic data, lifestyle factors and medical conditions, including sarcoidosis, were ascertained through biennial questionnaires. Self-reported diagnoses of sarcoidosis were confirmed in 96 percent of cases for whom medical records or physician checklists were obtained. The researchers obtained data regarding deaths and causes of death among study subjects from the National Death Index.

At the conclusion of their analysis, the researchers found that a total of 109 deaths occurred among 1,152 women with a history of sarcoidosis, reflecting a cumulative mortality rate of 9.5 percent. Of these deaths, the researchers determined that 25.7% (28 deaths) were directly attributable to sarcoidosis, and an additional 4.6% (five deaths) listed pulmonary hypertension or pulmonary fibrosis as the underlying or primary cause of death. Among women whose deaths were directly attributable to sarcoidosis, 46 percent were caused by respiratory failure. The median age at time of death among all deaths was 58 years.

"These findings highlight the importance of sarcoidosis, and pulmonary disease in particular, as a cause of premature death among black women with the disease," Dr. Tukey said. "This information can help prepare people with the disease to watch for worrisome symptoms so that treatment can be applied, and to alert doctors to the possibility of severe pulmonary disease in black women with sarcoidosis."

Future studies are planned within the Black Women's Health Study looking at genetic and environmental influences onsarcoidosis in black women, she said.