C58-03 Leveraging an International Virtual Patient Summit to Optimize a Shared Decision-Making Tool in Sarcoidosis

Abstract Rationale The Foundation for Sarcoidosis Research (FSR) held a patient-provider workshop at their June 2025 Virtual Patient Summit to get feedback on the Sarcoidosis Patient and Provider Checklist, a form intended to be collaboratively filled out physicians and patients that summarizes treating physician(s) name(s), body systems affected by sarcoidosis, how sarcoidosis was diagnosed, treatment options, and additional testing needed. FSR wanted to learn what workshop participants thought were the most useful purposes of this shared decision-making tool and how it might be improved. Methods In October 2025, FSR invited via email individuals living with sarcoidosis (and care partners) who participated in the June 2025 workshop to complete an online survey. Data were collected on demographics, years since sarcoidosis diagnosis, shared decision-making (modified SDM-Q-9), trust in their doctor (modified Trust in Physicians Scale), and information missing from and recommended changes to the tool. Results Of the 32 workshop attendees, 16 completed the survey. All participants were female, 31% identified as Black or African American, 13% Hispanic or Latino, 6% American Indian or Alaska Native, and 56% White. Average age was 61 years; 69% were diagnosed with sarcoidosis more than 10 years prior and 88% saw more than one doctor for sarcoidosis care. 75% of respondents noted the most useful purpose of the Checklist would be to educate a new healthcare provider about their sarcoidosis, and 69% to serve as a personal memory/tracking tool. When imagining their doctor completing the Checklist with them at the end of their visit, 82% either agreed or strongly agreed they would think their doctor is usually considerate of their needs and puts them first, 76% would trust their doctor’s judgments about their medical care, and 63% would trust their doctor to put their medical needs above all other considerations when treating their medical problems (Figure). Most said more space for notes or questions (81%) and an updatable digital version (63%) would increase its usefulness. Recommended additions to the Checklist included more details on medications, holistic and non-traditional treatment options, and precautions or contraindications for awareness. Conclusions The Sarcoidosis Patient and Provider Checklist’s utility as a shared decision-making tool is promising. It can be utilized in many contexts in the clinical setting, including increased understanding by a patient of their own disease, an educational tool for discussions with other healthcare providers, a memory or tracking aide, and facilitating discussions with others on the impacts of sarcoidosis. This abstract is funded by: Foundation for Sarcoidosis Research