Loss of quality of life and increased societal costs in patients with hypertrophic cardiomyopathy: the AFFECT-HCM study

S A C Schoonvelde; I Wiethoff; P P Zwetsloot; A Hirsch; C Knackstedt; T Germans; M Sikking; A F L Schinkel; M A van Slegtenhorst; J M A Verhagen; R A de Boer; S M A A Evers; M Hiligsmann; M Michels

doi:10.1093/ehjqcco/qcae092

Loss of quality of life and increased societal costs in patients with hypertrophic cardiomyopathy: the AFFECT-HCM study

S A C Schoonvelde^*
, I Wiethoff
, P P Zwetsloot
, A Hirsch
, C Knackstedt
, T Germans
, M Sikking
, A F L Schinkel
, M A van Slegtenhorst
, J M A Verhagen
, R A de Boer
, S M A A Evers
, M Hiligsmann
, M Michels

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

Abstract

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.

Original language	English
Pages (from-to)	174-185
Number of pages	12
Journal	European heart journal - Quality of care & clinical outcomes
Volume	11
Issue number	2
Early online date	8 Nov 2024
DOIs	https://doi.org/10.1093/ehjqcco/qcae092
Publication status	Published - 1 Mar 2025

Keywords

burden of disease
economic burden
healthcare
hypertrophic cardiomyopathy
quality of life
societal costs

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10.1093/ehjqcco/qcae092Licence: CC BY

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Schoonvelde, S. A. C., Wiethoff, I., Zwetsloot, P. P., Hirsch, A., Knackstedt, C., Germans, T., Sikking, M., Schinkel, A. F. L., van Slegtenhorst, M. A., Verhagen, J. M. A., de Boer, R. A., Evers, S. M. A. A., Hiligsmann, M., & Michels, M. (2025). Loss of quality of life and increased societal costs in patients with hypertrophic cardiomyopathy: the AFFECT-HCM study. European heart journal - Quality of care & clinical outcomes, 11(2), 174-185. https://doi.org/10.1093/ehjqcco/qcae092

@article{0e76628e6c444365a533b93ee0c3713e,

title = "Loss of quality of life and increased societal costs in patients with hypertrophic cardiomyopathy: the AFFECT-HCM study",

abstract = "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.",

keywords = "burden of disease, economic burden, healthcare, hypertrophic cardiomyopathy, quality of life, societal costs",

author = "Schoonvelde, \{S A C\} and I Wiethoff and Zwetsloot, \{P P\} and A Hirsch and C Knackstedt and T Germans and M Sikking and Schinkel, \{A F L\} and \{van Slegtenhorst\}, \{M A\} and Verhagen, \{J M A\} and \{de Boer\}, \{R A\} and Evers, \{S M A A\} and M Hiligsmann and M Michels",

year = "2025",

month = mar,

day = "1",

doi = "10.1093/ehjqcco/qcae092",

language = "English",

volume = "11",

pages = "174--185",

journal = "European heart journal - Quality of care \& clinical outcomes",

issn = "2058-5225",

publisher = "Oxford University Press",

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Schoonvelde, SAC, Wiethoff, I, Zwetsloot, PP, Hirsch, A, Knackstedt, C, Germans, T, Sikking, M, Schinkel, AFL, van Slegtenhorst, MA, Verhagen, JMA, de Boer, RA, Evers, SMAA , Hiligsmann, M & Michels, M 2025, 'Loss of quality of life and increased societal costs in patients with hypertrophic cardiomyopathy: the AFFECT-HCM study', European heart journal - Quality of care & clinical outcomes, vol. 11, no. 2, pp. 174-185. https://doi.org/10.1093/ehjqcco/qcae092

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

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.

KW - burden of disease

KW - economic burden

KW - healthcare

KW - hypertrophic cardiomyopathy

KW - quality of life

KW - societal costs

U2 - 10.1093/ehjqcco/qcae092

DO - 10.1093/ehjqcco/qcae092

M3 - Article

SN - 2058-5225

VL - 11

SP - 174

EP - 185

JO - European heart journal - Quality of care & clinical outcomes

JF - European heart journal - Quality of care & clinical outcomes

IS - 2

ER -

Loss of quality of life and increased societal costs in patients with hypertrophic cardiomyopathy: the AFFECT-HCM study

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Keywords

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