CHARACTERIZING REAL-WORLD DISEASE BURDENS IN CARDIAC AMYLOIDOSIS: A DESCRIPTIVE STUDY ON SOCIAL, ECONOMIC, AND ACCESS-RELATED IMPACTS ON PATIENTS IN GERMANY AND SPAIN
Author(s)
Rachel Knapp, MPA1, Jade Garratt-Wheeldon, BSc2, Sonia Gomez, MSc, PhD3, Jack Wright, MSc2, Thomas Evers, PhD4, James Horswill, PhD5, Katherine Smethers, BSc2, Maria Luisa Peña-Peña, MD, PhD6, Lars Michel, PD Dr. med. FESC7, Fernando Dominguez Rodríguez, MD, PhD8;
1Bayer AG, Berlin, Germany, 2Adelphi Real World, Bollington, United Kingdom, 3Syneos LLC, Santiago de Compostela, Spain, 4Bayer AG, Wuppertal, Germany, 5Bayer plc, Reading, United Kingdom, 6General Hospital of H.U. Virgen Del Rocio, Seville, Spain, 7West German Heart and Vascular Center, University Hospital Essen, Department of Cardiology and Vascular Medicine, Essen, Germany, 8Hospital Puerta de Hierro Majadahonda, Heart Failure and Inherited Cardiac Diseases Unit, Department of Cardiology, Madrid, Spain
1Bayer AG, Berlin, Germany, 2Adelphi Real World, Bollington, United Kingdom, 3Syneos LLC, Santiago de Compostela, Spain, 4Bayer AG, Wuppertal, Germany, 5Bayer plc, Reading, United Kingdom, 6General Hospital of H.U. Virgen Del Rocio, Seville, Spain, 7West German Heart and Vascular Center, University Hospital Essen, Department of Cardiology and Vascular Medicine, Essen, Germany, 8Hospital Puerta de Hierro Majadahonda, Heart Failure and Inherited Cardiac Diseases Unit, Department of Cardiology, Madrid, Spain
OBJECTIVES: Our study explored disease burdens and quality of life (QoL) in patients with transthyretin amyloid cardiomyopathy (ATTR-CM).
METHODS: We descriptively analyzed secondary data on 240 individuals with ATTR-CM from the Adelphi ATTR Disease Specific Programme™, a cross-sectional survey of cardiologists and patients in Germany and Spain during routine visits from September 2024 to January 2025. Cardiologists in Germany (n=30) and Spain (n=31) completed medical histories for 120 patients in each country, which were linked to voluntary patient survey data. Responses were descriptively analyzed and stratified by country.
RESULTS: A total of 118 patients (Germany: 89, Spain: 29) completed optional surveys. Patients reported the highest burden (moderate to severe impact on QoL) in association with anxiety related to worsening symptoms (63%), fatigue (55%), loss of independence (52%), and fear over financial impacts (41%). While more patients in Germany than Spain faced self-reported burdens, trends in the ranking of symptoms were generally consistent across countries. Among surveyed patients, 74% were not working at the time of ATTR-CM diagnosis (Germany: 75%, Spain: 68%). Around 10% of patients were employed and experienced no change in employment (Germany: 8%, Spain: 18%), while 16% reported a change in employment status/conditions after ATTR-CM diagnosis (Germany: 17%, Spain: 14%). Many patients (74%) reported that fear/worry about the financial impacts of ATTR-CM negatively affected their QoL. Overall, transportation accounted for the highest share of monthly out-of-pocket ATTR-CM-related costs in both countries. While 64% of patients reported no discomfort seeking help for their condition, the most commonly reported access burdens were long wait times for appointments, transportation issues, and patient reluctance for further testing.
CONCLUSIONS: While most patients with ATTR-CM in Germany and Spain were no longer working when surveyed, anxiety over disease progression and financial impacts, challenges accessing care, and loss of autonomy are common issues facing patients in the real world.
METHODS: We descriptively analyzed secondary data on 240 individuals with ATTR-CM from the Adelphi ATTR Disease Specific Programme™, a cross-sectional survey of cardiologists and patients in Germany and Spain during routine visits from September 2024 to January 2025. Cardiologists in Germany (n=30) and Spain (n=31) completed medical histories for 120 patients in each country, which were linked to voluntary patient survey data. Responses were descriptively analyzed and stratified by country.
RESULTS: A total of 118 patients (Germany: 89, Spain: 29) completed optional surveys. Patients reported the highest burden (moderate to severe impact on QoL) in association with anxiety related to worsening symptoms (63%), fatigue (55%), loss of independence (52%), and fear over financial impacts (41%). While more patients in Germany than Spain faced self-reported burdens, trends in the ranking of symptoms were generally consistent across countries. Among surveyed patients, 74% were not working at the time of ATTR-CM diagnosis (Germany: 75%, Spain: 68%). Around 10% of patients were employed and experienced no change in employment (Germany: 8%, Spain: 18%), while 16% reported a change in employment status/conditions after ATTR-CM diagnosis (Germany: 17%, Spain: 14%). Many patients (74%) reported that fear/worry about the financial impacts of ATTR-CM negatively affected their QoL. Overall, transportation accounted for the highest share of monthly out-of-pocket ATTR-CM-related costs in both countries. While 64% of patients reported no discomfort seeking help for their condition, the most commonly reported access burdens were long wait times for appointments, transportation issues, and patient reluctance for further testing.
CONCLUSIONS: While most patients with ATTR-CM in Germany and Spain were no longer working when surveyed, anxiety over disease progression and financial impacts, challenges accessing care, and loss of autonomy are common issues facing patients in the real world.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR122
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Cardiovascular Disorders (including MI, Stroke, Circulatory)