Abstract
PurposeThe clinical manifestations of sarcoidosis vary widely, depending on the intensity of the inflammation and the organ systems affected. Hence, sarcoidosis patients may suffer from a great variety of symptoms. The aim of this study was to compare the self-reported burden of sarcoidosis patients in Denmark, Germany and the Netherlands, especially the prevalence of fatigue and small fiber neuropathy (SFN)-related symptoms, as well as differences in treatment strategies.MethodsA cross-sectional web-based anonymous survey about complaints was conducted among sarcoidosis patients. Patients were invited to take part through the sarcoidosis patient societies as well as through outpatient sarcoidosis clinics in these countries.ResultsThe questionnaire was completed by 1072 sarcoidosis patients (152 Danish, 532 German and 388 Dutch). Almost all patients reported having sarcoidosis-associated symptoms (organ-related as well as non-specific, non-organ related). Fatigue was reported by almost all respondents (90%), followed by pulmonary symptoms (72.4%). More than 50% of the respondents were being treated with prednisone, which was comparable in all three countries. In contrast, second- and third-line treatment differed substantially between Denmark, Germany and the Netherlands.ConclusionSarcoidosis patients in Denmark, Germany and the Netherlands present with similar self-reported symptoms, organ-related as well as non-specific, non-organ related. Fatigue (90%) and symptoms associated with SFN (86%) were highly prevalent in all three countries.
Highlights
Sarcoidosis occurs throughout the world, affecting all races and ages
Other non-specific symptoms accounting for an important impact on the quality of life (QoL) of both patients and partners are small fiber neuropathy (SFN)related symptoms and everyday cognitive failure, including concentration problems, memory loss and decreased perception [7, 12,13,14,15]
Of the non-specific, non-organ-related symptoms, fatigue was reported by almost all sarcoidosis patients in all three countries
Summary
Sarcoidosis occurs throughout the world, affecting all races and ages. Its true prevalence remains unknown. Depending on the organs involved and the severity of granulomatous inflammation, patients suffer from a broad range of symptoms. In addition to organrelated symptoms, patients often suffer from disabling nonspecific, non-organ-related symptoms [7,8,9]. Fatigue is the most frequently reported non-specific burdensome symptom in sarcoidosis patients, with a prevalence ranging from 50 to 90% [10, 11]. Other non-specific symptoms accounting for an important impact on the quality of life (QoL) of both patients and partners are small fiber neuropathy (SFN)related symptoms and everyday cognitive failure, including concentration problems, memory loss and decreased perception [7, 12,13,14,15]. Drugs used to treat severe organ involvement in sarcoidosis generally do not influence these non-specific symptoms and tend to cause side effects which further increase the burden of disease
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
