Sarcoidosis: patient treatment priorities

Robert P Baughman, Rita Barriuso, Kelli Beyer, Jeanette Boyd, Johann Hochreiter, Chris Knoet, Filippo Martone, Bernd Quadder, Jack Richardson, Ginger Spitzer, Dominique Valeyre, Gianluca Ziosi, Robert P Baughman, Rita Barriuso, Kelli Beyer, Jeanette Boyd, Johann Hochreiter, Chris Knoet, Filippo Martone, Bernd Quadder, Jack Richardson, Ginger Spitzer, Dominique Valeyre, Gianluca Ziosi

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.

Conflict of interest statement

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.

Figures

FIGURE 1
FIGURE 1
Summary of the ranking for the outcome of the seven survey questions. The mean scores were between 1 (extremely important) and 3 (moderately important).

References

    1. European Medical Agency (EMA). Public summary of opinion on orphan designation. EMA/COMP/554715/2013. Date last updated: October 29, 2013.
    1. Denning DW, Pleuvry A, Cole DC. Global burden of chronic pulmonary aspergillosis complicating sarcoidosis. Eur Respir J 2013; 41: 621–626.
    1. Drent M, Costabel U, eds. Sarcoidosis (ERS Monograph). Sheffield, European Respiratory Society, 2005.
    1. Hendriks C, Drent M, De Kleijn W, et al. . Everyday cognitive failure and depressive symptoms predict fatigue in sarcoidosis: A prospective follow-up study. Respir Med 2018; 138S: S24–S30.
    1. Drent M, Stookappe B, Hoitsma E. Consequences of Sarcoidosis. Clin Chest Med 2015; 36: 727–737.
    1. Moor CC, van Manen MJG, van Hagen PM, et al. . Needs, perceptions and education in sarcoidosis: a live interactive survey of patients and partners. Lung 2018; 196: 569–575.
    1. European Lung Foundation/European Respiratory Society. Online survey: Sarcoidosis treatment and outcomes: what is most important to you? 2018.
    1. Baughman RP, Judson MA, Wells A. The indications for the treatment of sarcoidosis: Wells law. Sarcoidosis Vasc Diffuse Lung Dis 2017; 34: 280–282.
    1. Maier LA, Crouser ED, Martin WJ, et al. . Executive summary of the NHLBI workshop report: leveraging current scientific advancements to understand sarcoidosis variability and improve outcomes. Ann Am Thorac Soc 2017; 14: Suppl. 6, S420 S415.

Source: PubMed

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