Background: Patients suffering from sarcoidosis may present with a wide range of symptoms. The aim of this study was to make an inventory of the clinical presentation of the sarcoidosis population in the Netherlands.
Methods: Symptom inventory questionnaires were sent to all members of the Dutch Sarcoidosis Society. Of these 1755 sarcoidosis patients, 1026 (58%), (age 46.7 +/- 11.6, female 63%) completed the questionnaire.
Results: Familial sarcoidosis was reported by 170 patients (16.3%). In 57% of the cases the first diagnosis was sarcoidosis. Other diagnosis included rheumatoid arthritis (5.1%) and tuberculosis (4.8%). Treatment with systemic corticosteroids was reported by 565 patients (55.1%). The most frequently reported symptom was fatigue (71%), followed by dyspnea (70%), arthralgia (52%), muscle pain (39), chest pain (27%), and general weakness (22%). Moreover, 26% of patients suffered from disease-related tension and strain. No relationship was found between the reported symptoms and treatment with corticosteroids.
Conclusions: Sarcoidosis patients suffered from a broad range of persistent physical symptoms. In this study fatigue appeared to be the most commonly reported symptom. Intervention programs should focus on physical health as well as psychosocial aspects such as teaching patients how to cope with the disease.