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Background: Patients have had no curated, comprehensive educational resource about steroid use to facilitate shared decision-making conversations with their physicians. Consequently, shared decision-making around steroid treatment has been challenging. Sam (“Steroids and me”) was co-created by academic clinicians, patients, patient advocacy groups and industry leaders. This patient-focused program was designed to help patients and doctors collaborate on optimizing the use of steroids and discontinuing steroids altogether when this can be done safely.
Objectives: We report on Sam’s two-year development process and the first six months of Sam’s use. We present aggregated data from 2024 Sam users from the Vasculitis Foundation and follow up with 2025 data from steroid-treated Sam users whose inflammatory conditions include sarcoidosis, IgG4-RD, lupus, asthma, myasthenia gravis, and Crohn’s disease.
Methods: Platform Development:
Phase 1 (Resource Review ). A survey of the medical literature and internet for current, scientifically rigorous, patient-focused content on steroid use in clinical care.
Phase 2 (Needs Assessment ). Comprised of 2 international roundtable meetings of patient advocacy group leaders and industry representatives (total participants, n=36); separate meetings with 6 patient advocacy groups; 3 patient focus groups; and meetings with industry representatives from 5 companies.
Phase 3 (Platform Build ). The process of designing a cloud platform that is optimized for both mobile phones and tablets. A 34-member Sam engagement team of steroid-treated patients was assembled for one-on-one meetings, user testing, and journey validation of two pathways: learning and symptom tracking.
Sam is a patient companion, structured to provide learning modules and side effect tracking. These features align with several validated clinical outcome assessments of steroid toxicity: the Glucocorticoid Toxicity Index (GTI), the Glucocorticoid Toxicity Index-Metabolic Domains (GTI-MD), and the Glucocorticoid Toxicity-Baseline Score (GT-SNAPSHOT) [1].
User Engagement:
Phase 1 (Early Engagement ) consisted of introductions to Sam and audits by 7 patient advocacy groups (PAGs). Once approved by PAG scientific advisory boards, Sam was integrated into communication channels (e.g., direct invitation to members, educational resources on PAG sites, webinars on steroid-toxicity, and backlinks to Sam from PAG URLs).
Results: Platform Development:
In Phase 1 (Resource Review), audits failed to identify a single source of curated, comprehensive, patient-focused material on steroid-toxicity.
In Phase 2 (Needs Assessment), patient advocacy groups representing lupus, vasculitis, pemphigus, myasthenia gravis, sarcoidosis participated. Discussions with individual patients and groups of patients identified major unmet needs that were amplified by patient advocacy group leaders and industry. Focus group attendees expressed the need for original, scientifically rigorous, patient-friendly information housed in a single, easy-to-assess location. The focus groups requested tracking tools and journal capabilities as well.
Phase 3 (Sam build) was delivered as minimum viable product at EULAR 2024. Within a few months, early user data showed impressive engagement, intuitive design, steroid “rookies” (steroid initiated for < 6 months) as well as “veterans” (steroid initiated for > 6 months), useful content and effective tracking tools. Sam includes teaching videos and written modules about steroid adverse events from experts in: ophthalmology, infectious disease, psychiatry, nutrition, rheumatology, gastroenterology, and asthma.
More than 50 unique disease indications are preloaded in the program. Sam delivers education and instruction about more than 25 common, important, and dynamic steroid toxicities and offers patient-focused tracking tools for multiple side-effects. Additional tools, including mood and side effect tracking, prepare patients for shared decision-making conversations with their providers. The platform collects and stores longitudinal patient-reported data and displays a 30-day look back to summarize side effects to equip the patient for follow-up clinic visits.
The build of Sam acknowledges and adheres to HIPAA, GDPR, and state and nation-specific data privacy laws. Sam is free to all users. The same educational content is available to visitors as well to registered users, who join to use the tracking mechanisms.
User Engagement:
Phase 1 (Sam user cohorts) from a single (1) email invitation to the membership of the Vasculitis Foundation, early user data reflected:
Strong engagement in learning about steroid-toxicity
High conversion rate: 18% of all visitors became registered users
Major interest in “Why we taper” and “How to talk to my doctor”
Average number of articles read: 5
Average number of side effects tracked: 4
Average session time: 5 minutes with a maximum of 100 minutes
Conclusion: “Steroids and me” (Sam) is a unique, curated, patient-focused resource that has been missing during the 75 years in which steroids have been the cornerstone of care for dozens of inflammatory diseases. Sam’s core is a rigorous, patient-facing program that engages and educates lay users in plain language, results in deeper understanding of the power and pitfalls of steroid treatment, and includes suggestions to mitigate steroid side effects on quality of life. By empowering patients for meaningful conversations with their healthcare providers, Sam facilitates the shared decision-making around steroid use that is an essential step toward safe steroid tapers. The data on Sam to date imply robust adoption of the program, addressing a major unmet need in patient education around steroid use.
“Steroids and Me” is a practical approach to shared decision-making through educating and engaging steroid-treated patients to participate actively in their own care.
REFERENCES: [1] Patel NJ, Fu X, Zhang Y, Stone JH. Baseline Glucocorticoid-Related Toxicity Scores in Giant Cell Arteritis: A Post Hoc Analysis of the GiACTA Trial. ACR Open Rheumatol. 2023 Jan;5(1):51-58. doi: 10.1002/acr2.11520. Epub 2023 Jan 5. PMID: 36604825; PMCID: PMC9837393.
[2] Stone JH, McDowell PJ, Jayne DRW, Merkel PA, Robson J, Patel NJ, Zhang Y, Yue H, Bekker P, Heaney LG.The glucocorticoid toxicity index: Measuring change in glucocorticoid toxicity over time, Seminars in Arthritis and Rheumatism, Volume 55, 2022, 152010, ISSN 0049-0172,
[3] Patel, Naomi J et al. The Glucocorticoid Toxicity Index-Metabolic Domains, an abridged version of the Glucocorticoid Toxicity Index: post-hoc analysis of data from the ADVOCATE trial, The Lancet Rheumatology, Volume 5, Issue 7, e413 - e421.
Acknowledgements: NIL.
Disclosure of Interests: John H. Stone: None declared, Martha Stone AMGEN, ARGENX, AMGEN, ARGENX, EDUCATIONAL GRANTS FROM ABBVIE, ARGENX, AMGEN, ZENAS, STERITAS helped to fund the development of Steroids and me (Sam), Michelle Petri: None declared, George Papliodis: None declared, Camille Cotton: None declared, Meredith Marinaro: None declared, Jane McDowell: None declared, Jeffrey Gelfand: None declared, Huma Ansari: None declared, Kurtis Kaminishi: None declared.
© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (