Living with sarcoidosis: Virtual roundtable dialogue with patients and healthcare professionals

Sarcoidosis is a multisystem disease, characterised by the infiltration of various organs by non-necrotising granulomas. The disease's heterogeneity complicates the study of patients' experiences. To gather insight into life experiences, unmet needs and views on hypothetically emerging treatment options among patients living with sarcoidosis. Multinational, virtual, interactive, moderated discussion of specific questions between people with sarcoidosis, with experienced clinicians participating. Nine patients with sarcoidosis from Australia, Denmark, Germany, Italy, Japan and the US, and three clinicians took part. All patients had pulmonary sarcoidosis, self-assessed as mild by five patients. The path to diagnosis was convoluted, with up to four physicians and a large number of tests involved. There was agreement that the process would be improved by earlier referral to specialists. The patients made a clear distinction between ‘living with a condition’ (adapting to the disease) and ‘being ill’. The concept of remission was viewed sceptically as disease might develop in multiple organs. Panellists had a pragmatic attitude to therapies: side effects during a treatment course were accepted if overall symptoms improved. When considering hypothetical new therapies, improved quality of life (QoL) was the most important need; improved tolerability had lower priority. New therapies should be targeted on reducing disease progression and improving symptoms and QoL rather than corticosteroid withdrawal. The interactive exchange provided insights into the need for earlier specialist referrals, distrust of the concept of remission in sarcoidosis, and the need for therapies targeted on reducing disease progression and improving symptoms and QoL. •Patients with sarcoidosis prioritised quality of life when considering new therapies.•Corticosteroid withdrawal was not the highest priority.•Side effects during a treatment course were accepted if overall symptoms improved.•Patients were sceptical towards the concept of remission.•Patients made a clear distinction between ‘living with a condition’ and ‘being ill’.