A Snapshot of United States Sarcoidosis Patients and their Perceived Disease Impact: Results of the Sarcoidosis Research Institute Survey

Abstract

Purpose: The priorities and concerns of sarcoidosis patients in the United States (US) have not been well-described.

Methods: A survey constructed by sarcoidosis patients and doctors was administered to US sarcoidosis patients. The survey queried patients concerning their demographics, disease state, disease impact on health and well-being, health care priorities and impressions of sarcoidosis care. Respondents were solicited via social media and networking with sarcoidosis clinicians.

Results: 1018 US sarcoidosis patients completed this survey. 65% were female, 63% White, 34% Black, and 87% > 45 years old. The most common organs involved were the lungs 87%, skin 30%, heart 25%, and eyes 25%. Household income was < $50 K in 31% and > $150 K in 14% of patients. There was a fairly even split between those living in urban (29%), suburban (42%), and rural (29%) environments. The patients'greatest concerns were fear of worsening disease, fear of sarcoidosis developing in more organs, and fear of sarcoidosis not improving. These were closely followed by concerns about poor health-related quality of life (HRQoL), inability to enjoy everyday activities, lack of medical research, disability from sarcoidosis, and pulmonary function status. Lack of physician knowledge and poor physician communication were ranked of lowest concern. Concerns about ineffective medications and cost of medical care were also ranked relatively low. Patients overwhelmingly considered information from their doctor as very useful.

Conclusion: In this survey of over 1000 US sarcoidosis patients, their greatest concerns were fear of poor clinical outcomes. The patients were relatively less concerned about their doctors' knowledge about sarcoidosis and poor physician communication. Although patients expressed significant concerns about poor HRQoL, not all domains of HRQoL were equally affected. US sarcoidosis patients rank concerns about disease progression higher than disease impact on HRQoL.

Keywords: Fatigue; Health-related quality of life (HRQoL); Patient concerns; Patient perceptions; Patient priorities; Sarcoidosis; Shared decision-making (SDM); United States (US).

Fig. 1

Heat Map of the United States Showing Where Respondents Live. Forty-seven states were represented in our study however, 60% of survey respondents were from four (4) states-North Carolina (21%), New York (20%), South Carolina (11%), and Colorado (9%). Other states that contributed 20 or more patients include Ohio (3%), Virginia (4%), Oklahoma (2%), and Pennsylvania (2%)

Fig. 2

Ranking of the mean level of concern for each of the 23 sarcoidosis issues from highest to lowest. Means represent coded levels of concern where 0 = None, 1 = a little, 2 = moderate, 3 = a lot, 4 = a great deal. Vertical bars on the right connect issues with levels of concern that are not statistically significantly different from one another by ANOVA followed by Tukey’s multiple comparison test (applied to a subject's responses expressed as the difference from their average level of concern). For example, level of concern regarding “lack of medical research concerning sarcoidosis” is not significantly different from “Unable to enjoy everyday activities,” “disability from sarcoidosis,” “pulmonary function status,” and “death from sarcoidosis,” but is significantly less concerning than the first three listed fears and more concerning than “unable to enjoy free time” and all those listed below “unable to enjoy free time.” Minitab® 19 statistical software was used with significance assessed at p < 0.05

Fig. 3

Relative Level of Concern of Each Individual Patient. Figure shows mean (solid square) with horizonal bars indicating 95% confidence intervals for the mean for 954 to 980 responses relative to each respondent’s average level of concern. In order to determine the relative importance of each of these concerns in individual patients, we calculated the response score difference for each concern from the average score of all concerns for each patient and these were ranked as shown in the figure