Extract
Sarcoidosis is a rare disease with the number of patients in the European Union (28 member states), Norway, Iceland and Lichtenstein estimated as ∼102 000 [1, 2]. Some 40% of individuals experience sarcoidosis as a chronic condition, while >60% of individuals find that the disease resolves within 2–5 years [3]. However, it has been shown that patients can still have symptoms that result in a reduced quality of life (QoL) even after clinical signs of disease have disappeared. These symptoms include fatigue, pain, everyday cognitive failure, small fibre neuropathy, exercise limitation and depressive symptoms [4, 5]. Findings from a recent survey of patients and their partners in the Netherlands also showed that sarcoidosis has a significant impact on their lives [6].
Abstract
Sarcoidosis patient survey reveals QoL and functionality are required as core outcomes in treatment and care, along with more multidisciplinary working by clinicians and the establishment of specialist sarcoidosis centres in every European country http://ow.ly/DTvt30mQnqc
Footnotes
Conflict of interest: R.P. Baughman reports grants from Gilead (grant to study sarcoidosis associated pulmonary hypertension), Bayer (grant to study sarcoidosis associated pulmonary hypertension), National Institutes of Health (grant to study sarcoidosis therapy), Foundation for Sarcoidosis Research (grant to study sarcoidosis) and Genentech (grant to study sarcoidosis associated fibrosis), and grants and personal fees from Mallinckrodt (grant support to study sarcoidosis, consultant and speaker fees), outside the submitted work.
Conflict of interest: R. Barriuso has nothing to disclose.
Conflict of interest: K. Beyer has nothing to disclose.
Conflict of interest: J. Boyd is an employee of the European Lung Foundation.
Conflict of interest: J. Hochreiter has nothing to disclose.
Conflict of interest: C. Knoet has nothing to disclose.
Conflict of interest: F. Martone has nothing to disclose.
Conflict of interest: B. Quadder has nothing to disclose.
Conflict of interest: J. Richardson is an Employee of SarcoidosisUK – representing sarcoidosis patients in the UK.
Conflict of interest: G. Spitzer has nothing to disclose.
Conflict of interest: D. Valeyre reports personal fees from Boehringer Ingelheim (member of scientific advisory boards on IPF), Roche (member of scientific advisory boards on IPF), AstraZeneca (presentation in Avancées de pneumologie), and BI and Roche (support for accommodation and transportation at scientific meetings: ERS, ATS and CPLF), outside the submitted work.
Conflict of interest: G. Ziosi has nothing to disclose.
- Received August 28, 2018.
- Accepted November 6, 2018.
- Copyright ©ERS 2018
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