DESCRIBING THE ROLE OF CAREGIVERS IN ATTR-CM: A SECONDARY ANALYSIS OF SURVEY DATA FROM 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, Brianne Kerr, BSc2, Maria Luisa Peña-Peña, MD, PhD6, Fernando Dominguez Rodríguez, MD, PhD7, Lars Michel, PD Dr. med. FESC8;
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, 7Hospital Puerta de Hierro Majadahonda, Heart Failure and Inherited Cardiac Diseases Unit, Department of Cardiology, Madrid, Spain, 8West German Heart and Vascular Center, University Hospital Essen, Department of Cardiology and Vascular Medicine, Essen, Germany
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, 7Hospital Puerta de Hierro Majadahonda, Heart Failure and Inherited Cardiac Diseases Unit, Department of Cardiology, Madrid, Spain, 8West German Heart and Vascular Center, University Hospital Essen, Department of Cardiology and Vascular Medicine, Essen, Germany
Presentation Documents
OBJECTIVES: Our study investigated the role and responsibilities of caregivers supporting patients with transthyretin amyloid cardiomyopathy (ATTR-CM) in Germany and Spain.
METHODS: We performed a secondary analysis of patient-individual data on 240 individuals with ATTR-CM from the Adelphi ATTR Disease Specific Programme™, a cross-sectional survey in Germany and Spain. Survey data from treating cardiologists, patients, and caregivers were collected during routine care visits from September 2024 to January 2025. Responses were descriptively analyzed and stratified by country.
RESULTS: Cardiologists (n=30 and n=31) provided medical histories for 120 patients in Germany and Spain, respectively. Optional surveys were completed by 89 patients and 32 caregivers in Germany, and 29 patients and 18 caregivers in Spain. Mean patient age was 67 years in Germany and 76 years in Spain. At survey, over 90% of German patients were residing with a partner/spouse/immediate family vs 81% in Spain. Treating cardiologists indicated that 70% of patients were receiving support from ≥1 caregiver (Germany: 68%, Spain: 72%). Caregiving was performed by a partner/spouse in 81% of patients (Germany: 89%, Spain: 73%), adult children in 21% (Germany: 16%, Spain: 25%), and a professional caregiver in 11% (Germany: 6%, Spain: 15%). Caregiving activities were performed for ~23 hours/week over an average of 16 months. Common caregiving tasks included home maintenance/cleaning (Germany: 79%, Spain: 66%), shopping/meal preparation (Germany: 86%, Spain: 49%), and transportation (Germany: 69%, Spain: 43%). On average, caregivers had a high health state, with EQ-5D index scores of 0.91 in Germany and 0.93 in Spain (1=perfect health-related quality of life). Conversely, caregivers had a mean self-reported EQ-VAS score of 59.4 (moderate health) in Germany and 84.4 (good health) in Spain.
CONCLUSIONS: In ATTR-CM, caregiving is largely performed by partners/spouses, who primarily support patients with household tasks and transportation. Despite similar health states across countries, German caregivers reported lower wellbeing levels.
METHODS: We performed a secondary analysis of patient-individual data on 240 individuals with ATTR-CM from the Adelphi ATTR Disease Specific Programme™, a cross-sectional survey in Germany and Spain. Survey data from treating cardiologists, patients, and caregivers were collected during routine care visits from September 2024 to January 2025. Responses were descriptively analyzed and stratified by country.
RESULTS: Cardiologists (n=30 and n=31) provided medical histories for 120 patients in Germany and Spain, respectively. Optional surveys were completed by 89 patients and 32 caregivers in Germany, and 29 patients and 18 caregivers in Spain. Mean patient age was 67 years in Germany and 76 years in Spain. At survey, over 90% of German patients were residing with a partner/spouse/immediate family vs 81% in Spain. Treating cardiologists indicated that 70% of patients were receiving support from ≥1 caregiver (Germany: 68%, Spain: 72%). Caregiving was performed by a partner/spouse in 81% of patients (Germany: 89%, Spain: 73%), adult children in 21% (Germany: 16%, Spain: 25%), and a professional caregiver in 11% (Germany: 6%, Spain: 15%). Caregiving activities were performed for ~23 hours/week over an average of 16 months. Common caregiving tasks included home maintenance/cleaning (Germany: 79%, Spain: 66%), shopping/meal preparation (Germany: 86%, Spain: 49%), and transportation (Germany: 69%, Spain: 43%). On average, caregivers had a high health state, with EQ-5D index scores of 0.91 in Germany and 0.93 in Spain (1=perfect health-related quality of life). Conversely, caregivers had a mean self-reported EQ-VAS score of 59.4 (moderate health) in Germany and 84.4 (good health) in Spain.
CONCLUSIONS: In ATTR-CM, caregiving is largely performed by partners/spouses, who primarily support patients with household tasks and transportation. Despite similar health states across countries, German caregivers reported lower wellbeing levels.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
EE107
Topic
Economic Evaluation
Topic Subcategory
Work & Home Productivity - Indirect Costs
Disease
SDC: Cardiovascular Disorders (including MI, Stroke, Circulatory)