Our survey of over 1000 US sarcoidosis patients found that there was significant concern about many aspects of their disease. The patients’greatest concerns were about poor clinical outcomes such as worsening disease, developing sarcoidosis in more organs, and fear of sarcoidosis not improving. US sarcoidosis patients also expressed a high level of concern about poor HRQoL, inability to enjoy everyday activities, disability from disease, pulmonary function status and lack of medical research concerning sarcoidosis. Interestingly, patients considered concerns about lack of physician knowledge and poor physician communication to be of relatively lower importance. Adequate health insurance, the cost of medical care, and ineffective medications were also ranked lower than expected. Remarkably, although concern about poor HRQoL was ranked highly, not all domains of HRQoL were equally affected [12, 24]. Patients ranked the inability to enjoy everyday activities and free time (physical functioning) higher than social health domains such as embarrassment about sarcoidosis, poor relationships, or lack of understanding from others as a result disease. Our study results are robust in that we analyzed data in two different ways and observed an identical ranking of all 23 sarcoidosis issues.

These survey results suggest that although sarcoidosis patients in the US and Europe were similar in their level of concern about several sarcoidosis issues, there were also noteworthy differences [9, 16, 17, 20]. Similar to European sarcoidosis patients, fatigue was the most distressing symptom [16, 17]. Depression, emotional distress and mental health issues were also similarly common and equally distressing, as was chronic pain [16, 17]. In contradistinction, although both US and European sarcoidosis patients were very concerned about HRQoL issues, this was the prominent area of concern for European sarcoidosis patients whereas fear of worse disease outcomes was of primary importance to US sarcoidosis patients [9, 16, 20]. Notably, our study also revealed that although sarcoidosis affects HRQoL as a global construct, not all domains are equally affected. Patients ranked concerns about inability to enjoy everyday activities and free time (physical functioning) much higher than embarrassment, poor relationships, or impaired work-performance. Determining what aspects of HRQoL are most concerning to sarcoidosis patients may improve SDM and patient adherence to treatment regimens [25].

Unlike a large survey of European sarcoidosis patients [9], we found that US sarcoidosis patients ranked concerns about pulmonary function status very highly and equal in importance to HRQoL issues. The reasons for this are unclear but may be related to the sarcoidosis patients’source of medical information. It is plausible that this response may be a reflection of the health care provider’s viewpoint or perhaps a consequence of practice patterns that emphasize pulmonary function testing [13]. Nonetheless, both US and European sarcoidosis patients had relatively little concern about chest imaging findings [9].

It is important to emphasize that according to US sarcoidosis patients, the overwhelmingly most useful source of medical information was from their health care provider. This suggests that these patients are willing to participate in SDM if they are provided the opportunity by their caregiver. This finding also stresses the need for health care providers to remain well informed about sarcoidosis, especially because a significant proportion of sarcoidosis patients still feel inadequately educated about their disease [16], which has been shown to be a barrier to care, especially in sarcoidosis patients of low SES [26].

Some of our study findings were unexpected. US sarcoidosis patients completing our survey ranked lack of their doctors’knowledge and ineffective physician communication of low importance. In contradistinction, Harper and colleagues found that provider knowledge gaps and poor patient-provider communication emerged as highly significant barriers to care in a sarcoidosis patient focus group study conducted at a tertiary referral center [26]. We believe that the difference in findings between our study and that of Harper and colleagues has two likely explanations. First, the two studies asked different questions: ours concerned patient perceived disease impact, whereas the previous study focused on patient perceived barriers to care [26]. Second, 60 percent (60%) of our respondents were likely cared for at sarcoidosis centers of excellence, as they lived in the 4 states where we suspect sarcoidosis centers of excellence actively recruited participants. In fact, all 23 sarcoidosis issues were uniformly of less concern in the patients living in the 4 states where sarcoidosis centers of excellence actively recruited participation than in the other states represented in our study (Table 5). However, the relative concern of these 23 issues was extremely similar between these two groups (r = 0.897). Therefore, the priority of these concerns was almost identical in both these patient groups, suggesting that this relative level of concern is a universal finding.

We also found that adequate health insurance and cost of medical care were not a major concern for our patients. This likely reflects the relatively high SES of this cohort. It has been shown that sarcoidosis patients with a lower SES experience barriers to care because of medical care costs and inadequate health insurance [26]. Ineffective medications and medication side effects were also not a major concern. As we did not capture information concerning the patients’sarcoidosis medications or the dosages, we cannot ascertain if this finding relates to the percentage of sarcoidosis patients not receiving medications or to patients receiving a sarcoidosis treatment regimen that minimized drug toxicity, such as a corticosteroid-sparing or corticosteroid-replacing approach. We also cannot exclude the possibility that the corticosteroid-sparing agents that are currently available are adequate and that the need for alternative medications may not be as great an unmet need as currently thought. Nonetheless, the need for increased medical research in sarcoidosis was ranked very highly suggesting significant patient dissatisfaction with current sarcoidosis care.

Finally, concern about death from sarcoidosis was ranked highly. This may reflect that a high proportion of our patients had high-risk sarcoidosis phenotypes (cardiac and neurosarcoidosis) where the risk of death is significant [2, 5, 6]. A survey of European sarcoidosis patients also ranked survival as a major concern [9] although no data were collected on disease phenotypes. Future studies may need to evaluate patients’perceptions about death from sarcoidosis in relation to their disease severity and phenotype.

Our study has several limitations. First, patients self-reported their diagnosis of sarcoidosis, and we were unable to confirm this. In an attempt to address this limitation, we did specifically ask the respondents if they had sarcoidosis, were a relative or acquaintance of a sarcoidosis patient, or were in none of these categories. Secondly, organ involvement as well as medication use were also self-reported and may not be accurate. Thirdly, as with most survey studies, study participants were self-selected, and this may have induced biases in patient selection. An additional selection bias is that since this was an online survey, only patients with internet access and/or some social media presence could complete it. Finally, although we had broad representation of US sarcoidosis patients, 60% of study participants were from four states where a large percentage were likely cared for at four large sarcoidosis centers of excellence. These centers (often tertiary and/or referral institutions) are staffed by physicians well versed in sarcoidosis and are more likely to attract patients with more severe or chronic disease manifestations [27]. Consequently, our results may be biased towards sarcoidosis patients with more severe disease who also likely received more expert care. Remarkably, though we did note some slight differences in the ranking of sarcoidosis concerns of these patients compared to sarcoidosis concerns of patients residing in the other states, we found that the relative rankings of sarcoidosis concerns of patients in the top four states compared to patients from the rest of the country were very similar and highly correlated (r = 0.897).