EXPLORING PHYSICIANS’ PERSPECTIVES ON BARRIERS TO ENGAGING PATIENTS WITH RARE DISEASES AND/OR THEIR CAREGIVERS IN SHARED DECISION-MAKING IN THE UNITED STATES (US): FINDINGS FROM A CROSS-SECTIONAL SURVEY
Author(s)
Amina Omri, MA1, Stacey Purinton, MBA, MPH, RN2, Tim Irfan, Dipl.-Dok (FH), MBA3, Perrine Le Calvé, MSc1, Bastien Vincent, MS1, TAREK MNIF, PharmD1, Vicky Nogueira Pileggi, PhD4, Franco Esposito, BSc5, Tanya Louise Collin-Histed, -6, Suzanne Reed, BA, MSc, PhD1.
1Oracle Life Sciences, Paris, France, 2Oracle Life Sciences, Kansas City, MO, USA, 3Oracle Life Sciences, Munich, Germany, 4Oracle Life Sciences, São Paulo, Brazil, 5All Global, London, United Kingdom, 6International Gaucher Alliance, London, United Kingdom.
1Oracle Life Sciences, Paris, France, 2Oracle Life Sciences, Kansas City, MO, USA, 3Oracle Life Sciences, Munich, Germany, 4Oracle Life Sciences, São Paulo, Brazil, 5All Global, London, United Kingdom, 6International Gaucher Alliance, London, United Kingdom.
OBJECTIVES: To understand primary care physicians and specialists’ perceptions of the main barriers to shared decision-making in the United States (US).
METHODS: In October-November 2025, PCPs and specialists from the US were recruited via physician panels to complete an online survey.
RESULTS: Participants included 206 PCPs and 411 specialists.When asked about barriers to engaging patients with rare diseases and/or their caregivers in shared decision-making, respondents most frequently cited the complexity of the disease (83.0% overall, 85.0% PCPs, 82.0% specialists), followed by time constraints during consultation (68.6% overall, 71.4% PCPs, 67.2% specialists), limited patient understanding of disease (58.2% overall, 59.7% PCPs, 57.4% specialists), and patient or caregiver anxiety fear or stress (54.6% overall, 57.8% PCPs, 53.0% specialists). Additional factors included patients’ preference to defer decisions to clinicians (26.7% overall, 24.3% PCPs, 28.0% specialists) and cultural or language differences (25.3% overall, 25.2% PCPs, 25.3% specialists).
CONCLUSIONS: Shared decision making (SDM) represents a mature, respectful model of care that treats patients as partners and not as passive recipients. In rare diseases, the adoption of this approach is constrained by several barriers. The main obstacles to this approach are disease complexity and patients’ understanding, while logistical barriers, such as limited consultation time and language differences, also play a role. Addressing these challenges through effective patient education is therefore essential to enhance comprehension, support informed decision-making, and improve the implementation of this approach
METHODS: In October-November 2025, PCPs and specialists from the US were recruited via physician panels to complete an online survey.
RESULTS: Participants included 206 PCPs and 411 specialists.When asked about barriers to engaging patients with rare diseases and/or their caregivers in shared decision-making, respondents most frequently cited the complexity of the disease (83.0% overall, 85.0% PCPs, 82.0% specialists), followed by time constraints during consultation (68.6% overall, 71.4% PCPs, 67.2% specialists), limited patient understanding of disease (58.2% overall, 59.7% PCPs, 57.4% specialists), and patient or caregiver anxiety fear or stress (54.6% overall, 57.8% PCPs, 53.0% specialists). Additional factors included patients’ preference to defer decisions to clinicians (26.7% overall, 24.3% PCPs, 28.0% specialists) and cultural or language differences (25.3% overall, 25.2% PCPs, 25.3% specialists).
CONCLUSIONS: Shared decision making (SDM) represents a mature, respectful model of care that treats patients as partners and not as passive recipients. In rare diseases, the adoption of this approach is constrained by several barriers. The main obstacles to this approach are disease complexity and patients’ understanding, while logistical barriers, such as limited consultation time and language differences, also play a role. Addressing these challenges through effective patient education is therefore essential to enhance comprehension, support informed decision-making, and improve the implementation of this approach
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
HSD93
Topic
Health Service Delivery & Process of Care
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, SDC: Rare & Orphan Diseases