Majority of Sarcoidosis Patients Experience Fatigue, Survey Shows

Fatigue is the most commonly reported symptom by sarcoidosis patients in Denmark, Germany, and the Netherlands, according to a survey conducted by researchers from those countries. Nerve damage-related symptoms are a close second.

The study, “The Burden of Sarcoidosis Symptoms from a Patient Perspective” was published in the journal Lung.

Sarcoidosis is a chronic inflammatory condition affecting multiple organs. Few studies have addressed the prevalence of the disease and patient perspectives, leading to a lack of support and targeted treatment strategies.

Now, to outline the prevalence of sarcoidosis symptoms in three European countries, researchers conducted a survey among 1,072 patients (mean age 51.8 years) from Denmark, Germany, and the Netherlands. The web-based survey was anonymous, and focused on sarcoidosis-related symptoms. The majority of the participants were members of the Dutch Sarcoidosis Society and the Deutsche Sarkoidose Vereinigung.

The survey was conducted between October 2017 and April 2018 in the Netherlands; December 2017 and August 2018 in Germany and Denmark. Of the 1,072 patients, 152 were Danish, 532 German, and 388 Dutch.

The survey requested information on patient age, gender, sarcoidosis onset and duration, medications, and symptoms. Organ-related, organ-specific, and non-organ related general symptoms were assessed. Also, it included two questionnaires specifically validated for sarcoidosis – the Fatigue Assessment Scale (FAS) and the Small Fiber Neuropathy Screening List (SFNSL).

Symptoms were reported by 95% of the participants. Results showed that lung involvement was the most commonly reported complaint (72.4%), followed by musculoskeletal symptoms (70.2%).

The FAS questionnaire contains 10 questions about how the patient feels while dealing with fatigue. The response is scored on a five-point scale, with one indicating never experiencing symptoms, and five suggesting that the symptoms are always present. The score for all 10 questions is added to summarize the findings; a total score of more than 22 indicates fatigue, while more than 34 indicates extreme fatigue.

According to the FAS score obtained in the survey, fatigue was widespread as reported by 90% of sarcoidosis patients in the three countries. The mean FAS score in the three countries was 32.1, with the Dutch patients reporting fatigue the most (mean FAS 33.1). Extreme fatigue (FAS score higher than 34) was significantly higher among the Dutch (47.9%), and the Danish (46.3%) population, compared to the Germans (33.7%).

The SFNSL evaluates the occurrence of small fiber neuropathy (SFN)-related symptoms, such as pain and tingling in the feet and hands, heart palpitations, difficulty urinating, and muscle cramps. SFN is caused because of damage to the sensory and motor nerves.

The SFNSL contains 21 questions, each with five possible answers. Each response is graded from zero to four, ranging from never feeling the symptoms (zero), to their constant presence (four). The cumulative SFNSL score ranges from zero to 84. SFNSL of less than 11 indicates no or few neuropathy-related symptoms, 11-48 high probability, and greater than 48 truly indicative of SFN.

In all three countries, 86.2% of the sarcoidosis patients were affected by SFN-related symptoms, as indicated by a mean SFNSL score of 29. Denmark had the highest prevalence of SFN symptoms (91.9%) with a mean SFNSL score of 32.4, compared to Germany (84.6%) and Netherlands (82.2%). A similar trend was noted in the percentage of patients who had an SFNSL score greater than 48 — 18.5% in Denmark, 12.3% in Germany, and 15.5% in the Netherlands.

In addition to fatigue and SFN-related symptoms, other frequently reported symptoms included diminished energy (80.6%), poor concentration (54%), memory issues (51%), and sleeping problems (50.5%).

“In view of the broad range of possible symptoms, sarcoidosis patients may consult various doctors, so the management of sarcoidosis patients should use a multidisciplinary approach that focuses on somatic as well as psychosocial aspects of this erratic disorder,” the researchers said.

Prednisone was the most common initial medication used by patients in Denmark (56.6%), the Netherlands (54.8%), and Germany (51.4%).

In contrast, second and third-line treatment differed substantially among the three countries. Methotrexate was the second commonly used treatment — with 23.5%, 21.7%, and 8.5% patients reporting its use in Denmark, the Netherlands, and Germany, respectively. The other two medications reported include azathioprine (brand name Imuran), and TNF-alpha inhibitors.

Overall, “this study shows that sarcoidosis patients in Denmark, Germany, and the Netherlands report similar sarcoidosis-associated symptoms. … Fatigue (90%) and symptoms associated with SFN were highly prevalent in all three countries,” researchers stated.

The team also emphasized that “as treatment strategies differ in the three European countries we studied, updated international sarcoidosis treatment guidelines are urgently needed.”