The following is a summary of “Living with sarcoidosis: Virtual roundtable dialogue with patients and healthcare professionals,” published in the APRIL 2023 issue of Pulmonology by Judson, et al.

The disease sarcoidosis is characterized by the infiltration of different organs by non-necrotizing granulomas, making it a complicated condition to study. For a study, researchers sought to gain insight into the experiences, unmet needs, and opinions on potential emerging treatment options among patients living with sarcoidosis. 

The study was conducted through a virtual, interactive, and moderated discussion with patients with sarcoidosis from different countries, along with experienced clinicians. Specific questions were discussed to gather information on their experiences.

In the study, 9 patients with pulmonary sarcoidosis participated from different countries such as Australia, Denmark, Germany, Italy, Japan, and the US. Out of these 9 patients, 5 self-assessed their condition as mild. The diagnosis process was complex, with up to four physicians and many tests involved, and all the participants agreed that earlier referral to specialists could improve the process. The patients distinguished between “living with a condition” and “being ill”. They were skeptical about the concept of remission as the disease could develop in various organs. The panelists were pragmatic about therapies and accepted side effects during a treatment course if it led to an overall improvement in symptoms. When considering hypothetical new therapies, improving quality of life (QoL) was considered the most critical need, while improved tolerability had a lower priority. New therapies should focus on reducing disease progression, and improving symptoms and QoL, rather than corticosteroid withdrawal.

Insights were gained from the interactive discussion regarding the necessity for earlier specialist referrals, mistrust of the idea of remission in sarcoidosis, and the need for medicines aimed at slowing the course of the illness and enhancing symptoms and QoL.

Reference: resmedjournal.com/article/S0954-6111(23)00062-8/fulltext