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Participants are mailed biennial questionnaires to obtain updated information on disease outcomes and potential risk factors. They are asked to report on newly diagnosed disease and to list medications currently taken at least 3 days a week. On the baseline questionnaire, BWHS participants provided demographic data and information on medical and reproductive history, smoking and alcohol use, physical activity currently and in the past, current weight, waist and hip circumference, adult height, use of selected medications including oral contraceptives and female hormone supplements, diet, and use of medical care.
Many of these topics are included in the follow-up questionnaires. In particular, participants are asked to report on newly diagnosed disease and to list medications currently taken at least 3 days a week.
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On the baseline questionnaire, BWHS participants were asked if a physician had ever told them that they had any of a list of medical conditions. In , we began validating all self-reports of sarcoidosis reported since All women who reported an incident case of sarcoidosis were asked for permission to contact their physicians for information on diagnosis and treatment.
We relied on the clinical and diagnostic judgment of the physician and accepted their diagnosis classification definite, possible, or not sarcoidosis. Similarly, for those subjects for whom medical records were obtained, we classified the person as having sarcoidosis if the reporting physician had noted the diagnosis within the medical record.
We also asked women who reported either an incident or prevalent case of sarcoidosis to complete a supplemental survey e-Appendix 2 regarding diagnosis and symptoms. To date, we have received supplemental surveys, from incident cases and from prevalent cases. Based on the level of agreement between self-reports and physician data, women who report sarcoidosis on a BWHS questionnaire are included as cases of sarcoidosis unless the diagnosis has been disconfirmed by medical record or the woman has responded to our request for a supplemental questionnaire by notifying us that she did not have the diagnosis.
Sarcoidosis in Black Women in the United States
The median age at diagnosis was 32 years range: The current prevalence of sarcoidosis in the BWHS is 2. As shown in Table 2 , incident and prevalent cases of sarcoidosis were similar in terms of educational attainment, geographic area of current residence, and the type of area in which they grew up eg, rural. Prevalent cases were more likely to be employed in white-collar occupations. See Table 1 legend for expansion of abbreviation. To date, physician assessment questionnaires or medical records have been received for cases of sarcoidosis.
Other specialties represented include rheumatology, ophthalmology, and dermatology. Characteristics of the confirmed cases are presented in Table 3.
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Cardiac sarcoidosis was reported for only one woman. Sixty percent of women with a diagnostic chest radiograph were classified by their physicians as stage II or higher. Table 4 presents data collected on supplemental questionnaires completed by cases. Twenty-eight percent of women reported having a relative with a history of sarcoidosis, with half of those noting that the affected family member was a first-degree relative mother, father, sister, or brother.
Our study reports on the largest sample to date of sarcoidosis in black women in the United States.
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The current prevalence is 2. Our overall estimate, based on data from 12 years of observation, was higher. We also observed a later age-specific peak incidence, which may represent the age distribution of the participants in the BWHS. Indeed, the median age of diagnosis of prevalent cases in the BWHS was 32 years compared with 44 years for incident cases. Clinical presentation of sarcoidosis is highly variable. We reported data on the lungs and intrathoracic lymph nodes separately, whereas the ACCESS investigators report intrathoracic lymph nodes as lung involvement.
A recent article by Mehta et al 36 suggested that palpitations were a highly predictive symptom for cardiac involvement in sarcoidosis.
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We had only one physician report of cardiac involvement, possibly because of underrecognition of cardiac sarcoidosis. It is also possible the women with severe cardiac disease may have been less likely, or unable, to participate in the BWHS. Comorbid illness is believed to occur in the majority of patients with sarcoidosis. Among BWHS cases for which physician questionnaires or medical records were received, more than half were reported by their physicians to have comorbid illness.
Self-reports of other medical conditions by the 1, sarcoidosis cases support this finding. Specifically, cases reported the following comorbid conditions: Sixty percent of women with a comorbid condition reported experiencing three or more comorbid conditions. As expected, 3 , 4 corticosteroids were the most common treatment of symptomatic, systemic sarcoidosis, followed by noncorticosteroid therapies, such as methotrexate and Plaquenil.
Sarcoidosis in Black Women in the United States
Familial sarcoidosis has been commonly reported. Other studies have reported a lower proportion of familial cases. Headings et al 38 reported an estimated prevalence of sarcoidosis of 1. The variability in reports of familial sarcoidosis is not surprising. The diagnosis is not always clear and has become more common in recent years as physicians have become more aware of the disease.
It is not feasible in large observational studies to examine all participants for the presence of the disease of interest. Thus, in contrast to smaller studies that used clinical reports of sarcoidosis, 11 , 15 , 17 the BWHS relies on self-report of sarcoidosis. Our validation effort in a subset of women showed a satisfactory degree of accuracy of self-report. The goal of the present study within the BWHS is to accrue a large enough sample of incident cases for informative assessment of potential risk factors for the disease.
Because of the higher incidence in women, hormone-related factors, such as pregnancy 41 or menopausal status, 42 will be assessed. Most studies of sarcoidosis in the United States have focused on patients from limited geographic regions. In summary, the present study indicates accurate reporting of sarcoidosis in the BWHS. We also confirm previous reports of high incidence and prevalence of sarcoidosis among black women, as well as the extent of extrapulmonary disease, frequent need for steroid therapy, and comorbid conditions in this population. In the future, based on continued identification of incident cases in this large cohort, we will assess risk factors for the occurrence of the disease.
The e-Appendixes can be found in the Online Supplement at http: Reproduction of this article is prohibited without written permission from the American College of Chest Physicians http: National Center for Biotechnology Information , U. Published online Jul 1. Cozier , DSc, Jeffrey S. Berman , MD, Julie R. Palmer , ScD, Deborah A.
Boggs , MS, David M.
Author information Article notes Copyright and License information Disclaimer. Received Feb 12; Accepted May This article has been cited by other articles in PMC. Mindful Families of Durham Contact Name: Christ Episcopal Church of Downtown Raleigh is excited to announce its annual Run for Young 5K, a family-friendly race for the young and young at heart with a mission to raise awareness for teen Public bus transportation demystified! Find out how easy it is to map out a bus trip. Learn about door to door transportation and how to sign up for services.
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