The Burden of Sarcoidosis Symptoms from a Patient Perspective

Abstract

Purpose The 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. Methods A 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. Results The 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. Conclusion Sarcoidosis 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. Electronic supplementary material The online version of this article (10.1007/s00408-019-00206-7) contains supplementary material, which is available to authorized users.

Comprehensive Care for Patients with Sarcoidosis

“…Hence, Drent et al propose four different domains that should be evaluated in the complete work-up of a patient; not only the severity, extent and activity of the disease, but also the impact of disease [13]. In a recent survey with over 1000 respondents, 95% of patients reported sarcoidosis-related symptoms, and self-reported symptom burden of sarcoidosis was high [17]. Due to this high symptom burden, uncertain prospects, and sometimes social isolation and inability to work, sarcoidosis has a huge impact on lives of patients [3,13,18].…”

Health-Related Quality of Life in Sarcoidosis

“…135,136 It has been translated into over 20 different languages [137][138][139] and is the most commonly used instrument for assessing fatigue in sarcoidosis. 34,35,44,45,50,67,79,81,83,84,88,[134][135][136]138,[140][141][142][143][144][145][146][147][148][149][150][151][152][153][154][155][156] Five questions address mental fatigue, and the other five address physical fatigue. Each question is rated on a five-point scale for a total score of 10 to 50 points (higher scores indicate worse fatigue).…”

“…40 They may persist despite resolution of active disease and are known to affect HRQoL. [41][42][43][44][45][46][47] These syndromes are difficult to diagnose, treat, and monitor without utilizing HRQoL assessment instruments. 5,33,[48][49][50] A recent multinational initiative involving six expert interstitial lung disease (ILD) clinics in four countries includ-ing the U.S. identified HRQoL as one of seven core desired outcome measures to monitor in patients with pulmonary sarcoidosis.…”

The Burden of Neurosarcoidosis: Essential Approaches to Early Diagnosis and Treatment

“…Fatigue is a major predictor of cognitive dysfunction and the most frequently reported non-organ-specific symptom vary-ing from 50 to 90% in sarcoidosis 30,42,43 and >90% in NS. 6 Cognitive dysfunction or 'brain fog', characterized by concentration problems, memory loss and decreased perception resulting in cognitive errors in performing everyday tasks, 39,44 is substantial in sarcoidosis (35%), and more prevalent in NS patients (55%).…”

“…Pharmacological treatments for sarcoidosis may also contribute to fatigue and cognitive dysfunction, directly or due to side effects such as weight gain. 43 A multidisciplinary approach including coping strategies, stress reduction, weight management, and exercise may benefit sarcoidosis patients. 31,[108][109][110] Since most of these non-organ-specific symptoms are interrelated 31,48,111 and no specific treatment exists for cognitive dysfunction in sarcoidosis patients, treating fatigue also resulted in an improvement of cognition.…”