TY - JOUR
T1 - Loss of quality of life and increased societal costs in patients with hypertrophic cardiomyopathy
T2 - the AFFECT-HCM study
AU - Schoonvelde, S A C
AU - Wiethoff, I
AU - Zwetsloot, P P
AU - Hirsch, A
AU - Knackstedt, C
AU - Germans, T
AU - Sikking, M
AU - Schinkel, A F L
AU - van Slegtenhorst, M A
AU - Verhagen, J M A
AU - de Boer, R A
AU - Evers, S M A A
AU - Hiligsmann, M
AU - Michels, M
N1 - Publisher Copyright:
© 2024 The Author(s).
PY - 2025/3/1
Y1 - 2025/3/1
N2 - Introduction: Hypertrophic cardiomyopathy (HCM) is the most prevalent inherited cardiac disease. The impact of HCM on quality of life (QoL) and societal costs remains poorly understood. This prospective multi-centre burden of disease study estimated QoL and societal costs of genotyped HCM patients and genotype-positive phenotype-negative (G+/P-) subjects. Methods and results: Participants were categorized into three groups based on genotype and phenotype: (i) G+/P- [left ventricular (LV) wall thickness <13 mm], (ii) non-obstructive HCM [nHCM, LV outflow tract (LVOT) gradient <30 mmHg], and (iii) obstructive HCM (oHCM, LVOT gradient ≥30 mmHg). We assessed QoL with EQ-5D-5L and Kansas City Cardiomyopathy Questionnaires (KCCQ). Societal costs were measured using medical consumption (Medical Consumption Questionnaire) and productivity cost (iMTA Productivity Cost Questionnaire) questionnaires. We performed subanalyses within three age groups: <40, 40-59, and ≥60 years. From three Dutch hospitals, 506 subjects were enrolled (84 G+/P-, 313 nHCM, 109 oHCM; median age 59 years, 39% female). HCM (both nHCM and oHCM) patients reported reduced QoL vs. G+/P- subjects (KCCQ: 88 vs. 98, EQ-5D-5L: 0.88 vs. 0.96; both P < 0.001). oHCM patients reported lower KCCQ scores than nHCM patients (83 vs. 89, P = 0.036). Societal costs were significantly higher in HCM patients (€19,035/year vs. €7385/year) compared with G+/P- controls, mainly explained by higher healthcare costs and productivity losses. Being symptomatic and of younger age (<60 years) particularly led to decreased QoL and increased costs. Conclusion: HCM is associated with decreased QoL and increased societal costs, especially in younger and symptomatic patients. oHCM patients were more frequently symptomatic than nHCM patients. This study highlights the substantial disease burden of HCM and can aid in assessing new therapy cost-effectiveness for HCM in the future.
AB - Introduction: Hypertrophic cardiomyopathy (HCM) is the most prevalent inherited cardiac disease. The impact of HCM on quality of life (QoL) and societal costs remains poorly understood. This prospective multi-centre burden of disease study estimated QoL and societal costs of genotyped HCM patients and genotype-positive phenotype-negative (G+/P-) subjects. Methods and results: Participants were categorized into three groups based on genotype and phenotype: (i) G+/P- [left ventricular (LV) wall thickness <13 mm], (ii) non-obstructive HCM [nHCM, LV outflow tract (LVOT) gradient <30 mmHg], and (iii) obstructive HCM (oHCM, LVOT gradient ≥30 mmHg). We assessed QoL with EQ-5D-5L and Kansas City Cardiomyopathy Questionnaires (KCCQ). Societal costs were measured using medical consumption (Medical Consumption Questionnaire) and productivity cost (iMTA Productivity Cost Questionnaire) questionnaires. We performed subanalyses within three age groups: <40, 40-59, and ≥60 years. From three Dutch hospitals, 506 subjects were enrolled (84 G+/P-, 313 nHCM, 109 oHCM; median age 59 years, 39% female). HCM (both nHCM and oHCM) patients reported reduced QoL vs. G+/P- subjects (KCCQ: 88 vs. 98, EQ-5D-5L: 0.88 vs. 0.96; both P < 0.001). oHCM patients reported lower KCCQ scores than nHCM patients (83 vs. 89, P = 0.036). Societal costs were significantly higher in HCM patients (€19,035/year vs. €7385/year) compared with G+/P- controls, mainly explained by higher healthcare costs and productivity losses. Being symptomatic and of younger age (<60 years) particularly led to decreased QoL and increased costs. Conclusion: HCM is associated with decreased QoL and increased societal costs, especially in younger and symptomatic patients. oHCM patients were more frequently symptomatic than nHCM patients. This study highlights the substantial disease burden of HCM and can aid in assessing new therapy cost-effectiveness for HCM in the future.
UR - http://www.scopus.com/inward/record.url?scp=86000182147&partnerID=8YFLogxK
U2 - 10.1093/ehjqcco/qcae092
DO - 10.1093/ehjqcco/qcae092
M3 - Article
C2 - 39520534
SN - 2058-5225
VL - 11
SP - 174
EP - 185
JO - European Heart Journal - Quality of Care and Clinical Outcomes
JF - European Heart Journal - Quality of Care and Clinical Outcomes
IS - 2
ER -