TY - JOUR T1 - Sarcoidosis treatment and outcomes: what is most important to patients? JF - European Respiratory Journal JO - Eur Respir J DO - 10.1183/13993003.congress-2018.PA5219 VL - 52 IS - suppl 62 SP - PA5219 AU - Jeanette Boyd AU - Robert P. Baughman AU - Dominique Valeyere AU - Ana Rosa Álvarez Rodríguez AU - Linda Charvoz AU - Hanns-Peter Faber AU - Chris Knoet AU - Filippo Martone AU - Dorrit Irène Novel AU - Bernd Quadder AU - Jack Richardson AU - Ginger Spitzer AU - Gianluca Ziosi AU - Johanna Hochreiter Y1 - 2018/09/15 UR - http://erj.ersjournals.com/content/52/suppl_62/PA5219.abstract N2 - Purpose of Study: A sarcoidosis treatment guidleine is being developed by a European Respiratory Society (ERS) working group. The sarcoidosis support groups were asked to provide input regarding what outcomes were most important to the patient.Methods: Sarcoidosis support groups in collaboration with the European Lung Foundation developed an outcome survey that was translated into six languages. Individual outcomes were given overall titles and defintiions for each outcome were provided. Patients were asked to rank each outcome on a 5 point scale from 1 (extremely important) to 5 (not important at all).Results: To date, 778 individuals have completed the survey in their native langauge: 270 German, 158 English, 147 Italians. 112 Dutch, 73 Spanish, and 8 French using an online survey. The eight outcomes and scores were: quality of life (1.41); Functionality (1.43); Survival (1.69); Imaging (1.84); Adverse events (1.86); Blood tests (1.98); Pulmonary function tests (2.06). All outcomes ranged from Extremely important (1) to Very important (2). Of the outcomes, quality of life and functionality were the most important, while blood tests and pulmonary function tests were less important outcomes. Imaging was ranked as a more important outcome than blood or pulmonary function tests.Conclusion: Sarcoidosis patients ranked treatments which improved quality of life and functionality as most important outcomes. Patients ranked adverse events as a less important outcome than quality of life, survival, and functionality.FootnotesCite this article as: European Respiratory Journal 2018 52: Suppl. 62, PA5219.This is an ERS International Congress abstract. No full-text version is available. Further material to accompany this abstract may be available at www.ers-education.org (ERS member access only). ER -