ATTITUDES TOWARDS PATIENT-CENTERED RARE DISEASE CARE AMONG PHYSICIANS IN FIVE EUROPEAN COUNTRIES: A CROSS-SECTIONAL SURVEY
Author(s)
Alissar Moussallem, MPH, PharmD1, Tim Irfan, MBA2, Stacey Purinton, MBA, MPH, RN3, Perrine Le Calvé, MSc1, Amina Omri, MA1, TAREK MNIF, PharmD1, Vicky Nogueira Pileggi, PhD4, Bastien Vincent, MSc1, Franco Esposito, BSc5, Tanya Louise Collin-Histed, .6, Suzanne Reed, BA, MSc, PhD1.
1Oracle Life Sciences, Paris, France, 2Oracle Life Sciences, Munich, Germany, 3Oracle Life Sciences, Kansas City, MO, USA, 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, Munich, Germany, 3Oracle Life Sciences, Kansas City, MO, USA, 4Oracle Life Sciences, São Paulo, Brazil, 5All Global, London, United Kingdom, 6International Gaucher Alliance, London, United Kingdom.
OBJECTIVES: To describe patient-centered attitudes and clinical practice among physicians managing patients with rare diseases (RD).
METHODS: A cross-sectional online survey was conducted among physicians across multiple specialties in the UK, France, Germany, Italy, and Spain, between October and November 2025. Physicians were recruited via specialty panels and completed a questionnaire comprising binary and Likert scale items. Descriptive statistics were used, with bivariate analyses to compare outcomes across specialty groups.
RESULTS: A total of 1184 physicians participated, including 352 primary care physicians (PCPs; general practice and family medicine) and 832 specialists, with most reporting at least 10 years of clinical experience. Regarding attitudes toward RD management, physicians most commonly agreed that showing empathy (86%), encouraging patient involvement in decision-making (77%), and adopting a holistic approach (61%), are important aspects of care. Physicians also recognised the value of patient interactions as a source of learning about RDs, including symptomology (70%), burden on quality of life (62%), and natural history (62%). These attitudes were reflected in practice, with most physicians indicating that they considered patients’ perspectives (68%) and engaged in mutual information exchange (68%) when initiating or switching treatment. However, consultation dynamics differed across care settings. PCPs were more likely than specialists to involve patients in decision-making (65% vs 58%), while specialists more often assumed the role of primary decision-maker (35% vs 52%) (p≤0.001).
CONCLUSIONS: These findings highlight that physicians in Europe endorse patient-centered rare disease management, recognising patients as whole individuals whose care encompasses clinical, emotional, and personal dimensions. Yet some gaps exist in how these attitudes are reflected in practice, particularly across types of physicians, as PCPs appear more inclined than specialists to involve patients in the decision-making loop. These results underscore a need for initiatives to close the gap between attitudes and real-world practice, promoting shared decision-making in rare disease management.
METHODS: A cross-sectional online survey was conducted among physicians across multiple specialties in the UK, France, Germany, Italy, and Spain, between October and November 2025. Physicians were recruited via specialty panels and completed a questionnaire comprising binary and Likert scale items. Descriptive statistics were used, with bivariate analyses to compare outcomes across specialty groups.
RESULTS: A total of 1184 physicians participated, including 352 primary care physicians (PCPs; general practice and family medicine) and 832 specialists, with most reporting at least 10 years of clinical experience. Regarding attitudes toward RD management, physicians most commonly agreed that showing empathy (86%), encouraging patient involvement in decision-making (77%), and adopting a holistic approach (61%), are important aspects of care. Physicians also recognised the value of patient interactions as a source of learning about RDs, including symptomology (70%), burden on quality of life (62%), and natural history (62%). These attitudes were reflected in practice, with most physicians indicating that they considered patients’ perspectives (68%) and engaged in mutual information exchange (68%) when initiating or switching treatment. However, consultation dynamics differed across care settings. PCPs were more likely than specialists to involve patients in decision-making (65% vs 58%), while specialists more often assumed the role of primary decision-maker (35% vs 52%) (p≤0.001).
CONCLUSIONS: These findings highlight that physicians in Europe endorse patient-centered rare disease management, recognising patients as whole individuals whose care encompasses clinical, emotional, and personal dimensions. Yet some gaps exist in how these attitudes are reflected in practice, particularly across types of physicians, as PCPs appear more inclined than specialists to involve patients in the decision-making loop. These results underscore a need for initiatives to close the gap between attitudes and real-world practice, promoting shared decision-making in rare disease management.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
HSD118
Topic
Health Service Delivery & Process of Care, Real World Data & Information Systems
Disease
Rare & Orphan Diseases