Quality of life and societal costs in hypertrophic cardiomyopathy: protocol of the AFFECT-HCM study

Abstract

Background Ever since the first description of hypertrophic cardiomyopathy (HCM), the most common genetic cardiac disease, tremendous progress has been made in the evaluation and management of HCM patients, but little attention has been focused on the impact of HCM on societal costs and quality of life (QoL). Aims This paper describes the study protocol for the AFFECT-HCM study into burden of disease (BoD), which aims to estimate health-related QoL and societal costs in HCM patients and genotype-positive phenotype-negative (G+/P−) relatives during a one-year follow-up study, and relate this to the phenotypical HCM expression. Methods A total of 400 Dutch HCM patients and 100 G+/P− subjects will be followed for one year in a prospective, multi-centre, prevalence-based BoD study. Societal costs will be measured via a bottom-up approach using the cost questionnaires iMCQ and iPCQ. For QoL, the generic EQ-5D-5L and disease-specific Kansas City Cardiomyopathy Questionnaire will be used. QoL and societal costs will be compared with phenotype-specific HCM characteristics and other determinants to identify factors that influence BoD. Accelerometry will test the correlation between BoD and physical activity. Conclusion The AFFECT-HCM study will evaluate the BoD in HCM patients and G+/P− subjects to improve the understanding of the societal and economic impact of HCM.

A comparison of the EQ-5D-5L and the SF-6Dv2 among patients with hypertrophic obstructive cardiomyopathy

“…Typical symptoms include exertional dyspnea and weakness, chest pain, and palpitations, which tremendously impact patients' physical health and health-related quality of life (HRQoL) [6]. Parallel to this, HOCM is closely related to considerable expenditures on healthcare and imposes an enormous financial burden on global health budgets [7].…”

Individual, societal and clinical burden of cardiovascular disease: health technology assessment to guide new diagnostics and treatment strategies

“…A systematic literature search indeed illustrated that there is limited current knowledge of the societal and economic burden of the most common forms of inherited cardiac disease: hypertrophic cardiomyopathy (HCM) and dilated cardiomyopathy [ 5 ]. To increase knowledge of QoL and societal costs of HCM in the Netherlands, a prospective burden of disease study in HCM patients and preclinical genotype-positive individuals has been designed [ 6 ]. The results of such early HTAs will not only give insight into the potential cost-effectiveness of different diagnostics and interventions, but will also guide the future research agenda on inherited cardiomyopathies, i.e.…”