EXPLORING BARRIERS TO SHARED DECISION-MAKING (SDM) IN RARE DISEASES FROM THE PHYSICIAN PERSPECTIVE IN EUROPE: 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, MSc1, TAREK MNIF, PharmD1, Franco Esposito, BSc4, Tanya Louise Collin-Histed, ,5, Suzanne Reed, BA, MSc, PhD1.
1Oracle Life Sciences, Paris, France, 2Oracle Life Sciences, Missouri, MO, USA, 3Oracle Life Sciences, Munich, Germany, 4All Global, London, United Kingdom, 5International Gaucher Alliance, London, United Kingdom.
1Oracle Life Sciences, Paris, France, 2Oracle Life Sciences, Missouri, MO, USA, 3Oracle Life Sciences, Munich, Germany, 4All Global, London, United Kingdom, 5International Gaucher Alliance, London, United Kingdom.
OBJECTIVES: To evaluate primary care physicians’ and specialists’ perspectives on barriers to shared decision-making in Europe.
METHODS: In this cross-sectional study, primary care physicians and specialists from France (n=189), Germany (n=178), Italy (n=335), Spain (n=317), and the United Kingdom (UK) (n=165) were recruited via physician panels to complete an online survey in October-November 2025.
RESULTS: Participants included 352 PCPs and 832 specialists: cardiology (92), pediatrics (86), pulmonology (75), dermatology (69), gastroenterology (60), rheumatology (59), neurology (58), endocrinology/diabetology (56), ophthalmology (49), urology (49), obstetrics/gynecology (48), nephrology (46), internal medicine (35), infectious diseases (29), and hematology/oncology (21). Most frequently cited barriers to SDM were disease complexity (77%), time constraints during consultation (58%), limited patient understanding of disease (52%), and patient or caregiver anxiety, fear, or stress (46%). Additional factors included cultural or language differences (29%) and patients’ preference to defer decisions to clinicians (29%). Significant differences between European countries were observed for time constraints during consultation (p<0.0001), which were more frequently reported in the UK (73%), Germany (67%), and Spain (65%) than in France (46%) and Italy (45%). Cultural or language differences (p<0.0001), reported more frequently in Germany (44%) and France (34%) than in Spain (22%) and Italy (25%), and patients deferring decisions to clinicians (p=0.001), reported more frequently in Spain (34%), UK (33%), and France (32%) than in Germany (25%) and Italy (21%). No significant differences between countries were observed for disease complexity (range: Spain, 74%; France, 80%), patient/caregiver anxiety, fear, stress (range: Germany 40%; Spain 49%) and limited patient understanding of disease (range: Spain 47%; France 60%).
CONCLUSIONS: In rare diseases, the implementation of SDM may be influenced by multiple barriers. Addressing these barriers may enhance patient engagement and support effective SDM implementation in rare disease care.
METHODS: In this cross-sectional study, primary care physicians and specialists from France (n=189), Germany (n=178), Italy (n=335), Spain (n=317), and the United Kingdom (UK) (n=165) were recruited via physician panels to complete an online survey in October-November 2025.
RESULTS: Participants included 352 PCPs and 832 specialists: cardiology (92), pediatrics (86), pulmonology (75), dermatology (69), gastroenterology (60), rheumatology (59), neurology (58), endocrinology/diabetology (56), ophthalmology (49), urology (49), obstetrics/gynecology (48), nephrology (46), internal medicine (35), infectious diseases (29), and hematology/oncology (21). Most frequently cited barriers to SDM were disease complexity (77%), time constraints during consultation (58%), limited patient understanding of disease (52%), and patient or caregiver anxiety, fear, or stress (46%). Additional factors included cultural or language differences (29%) and patients’ preference to defer decisions to clinicians (29%). Significant differences between European countries were observed for time constraints during consultation (p<0.0001), which were more frequently reported in the UK (73%), Germany (67%), and Spain (65%) than in France (46%) and Italy (45%). Cultural or language differences (p<0.0001), reported more frequently in Germany (44%) and France (34%) than in Spain (22%) and Italy (25%), and patients deferring decisions to clinicians (p=0.001), reported more frequently in Spain (34%), UK (33%), and France (32%) than in Germany (25%) and Italy (21%). No significant differences between countries were observed for disease complexity (range: Spain, 74%; France, 80%), patient/caregiver anxiety, fear, stress (range: Germany 40%; Spain 49%) and limited patient understanding of disease (range: Spain 47%; France 60%).
CONCLUSIONS: In rare diseases, the implementation of SDM may be influenced by multiple barriers. Addressing these barriers may enhance patient engagement and support effective SDM implementation in rare disease care.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
HSD93
Topic
Health Service Delivery & Process of Care
Disease
Rare & Orphan Diseases