Evidence map›Paper›PMID 39520534›Full record

ArticleEuropean heart journal. Quality of care & clinical outcomes2025

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

Stephan A C Schoonvelde, Isabell Wiethoff, Peter-Paul Zwetsloot, Alexander Hirsch, Christian Knackstedt, Tjeerd Germans, Maurits Sikking, Arend F L Schinkel, Marjon A van Slegtenhorst, Judith M A Verhagen and 4 more

Abstract readMulticenter Study
In one paragraph

Article in European heart journal. Quality of care & clinical outcomes, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

9 citing papers in PubMed.

  1. Review
  2. Assessing Quality of Life in Genetic Cardiomyopathies: A Scoping Review.International journal of environmental research and public health · 2026
    Article
  3. Article
  4. Article
  5. Article
  6. Article
  7. Addressing discrepancies in symptom and psychosocial assessments in hypertrophic cardiomyopathy.International journal of cardiology. Cardiovascular risk and prevention · 2025
    Article
  8. Observational
  9. Observational
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

14 authors.

Stephan A C SchoonveldeDepartment of Cardiology, Erasmus MC, Cardiovascular Institute, Thorax Center, Dr. Molewaterplein 40, 3015 GD, Rotterdam, The Netherlands.ORCID 0000-0001-6235-016X
Isabell WiethoffDepartment of Health Services Research, Care and Public Health Research Institute (CAPHRI), Maastricht University, 6229 ER, Maastricht, The Netherlands.ORCID 0000-0002-2608-2900
Peter-Paul ZwetslootDepartment of Cardiology, Erasmus MC, Cardiovascular Institute, Thorax Center, Dr. Molewaterplein 40, 3015 GD, Rotterdam, The Netherlands.ORCID 0000-0002-2634-4667
Alexander HirschDepartment of Cardiology, Erasmus MC, Cardiovascular Institute, Thorax Center, Dr. Molewaterplein 40, 3015 GD, Rotterdam, The Netherlands.ORCID 0000-0002-3315-2006
Christian KnackstedtDepartment of Cardiology and Cardiovascular Research Institute Maastricht (CARIM), Maastricht University Medical Center+, 6229 HX, Maastricht, The Netherlands.ORCID 0000-0002-5457-3010
Tjeerd GermansDepartment of Cardiology, Northwest Clinics, 1815 JD, Alkmaar, the Netherlands.ORCID 0000-0003-2781-0145
Maurits SikkingDepartment of Cardiology and Cardiovascular Research Institute Maastricht (CARIM), Maastricht University Medical Center+, 6229 HX, Maastricht, The Netherlands.ORCID 0000-0001-8165-6631
Arend F L SchinkelDepartment of Cardiology, Erasmus MC, Cardiovascular Institute, Thorax Center, Dr. Molewaterplein 40, 3015 GD, Rotterdam, The Netherlands.ORCID 0000-0002-6424-0754
Marjon A van SlegtenhorstDepartment of Clinical Genetics, Erasmus MC, 3015 GD, Rotterdam, The Netherlands.
Judith M A VerhagenDepartment of Clinical Genetics, Erasmus MC, 3015 GD, Rotterdam, The Netherlands.ORCID 0000-0002-0340-3433
Rudolf A de BoerDepartment of Cardiology, Erasmus MC, Cardiovascular Institute, Thorax Center, Dr. Molewaterplein 40, 3015 GD, Rotterdam, The Netherlands.ORCID 0000-0002-4775-9140
Silvia M A A EversDepartment of Health Services Research, Care and Public Health Research Institute (CAPHRI), Maastricht University, 6229 ER, Maastricht, The Netherlands.ORCID 0000-0003-1026-570X
Mickaël HiligsmannDepartment of Health Services Research, Care and Public Health Research Institute (CAPHRI), Maastricht University, 6229 ER, Maastricht, The Netherlands.
Michelle MichelsDepartment of Cardiology, Erasmus MC, Cardiovascular Institute, Thorax Center, Dr. Molewaterplein 40, 3015 GD, Rotterdam, The Netherlands.ORCID 0000-0001-6432-0431

Funding

Bristol-Myers Squibb
6 · The paper itself

Abstract

introductionHypertrophic 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

resultsParticipants 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.

conclusionHCM 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.

Indexed as

Cardiomyopathy, HypertrophicCost of IllnessHealth Care CostsQuality of LifeAdultAgedFemaleGenotypeHumansMaleMiddle AgedNetherlandsPhenotypeProspective StudiesSurveys and QuestionnairesBurden of diseaseEconomic burdenHealthcareHypertrophic cardiomyopathyQuality of lifeSocietal costs

Identifiers

PMID39520534
PMCPMC11879321

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.