Evidence map›Paper›PMID 40436429›Full record

Observational studyOpen heart2025

Assessing the psychometric properties of generic (EQ-5D-5L) and disease-specific (KCCQ) quality of life in patients with hypertrophic cardiomyopathy in the AFFECT-HCM study.

Isabell Wiethoff, Stephan A C Schoonvelde, Rudolf A de Boer, Silvia M A A Evers, Tjeerd Germans, Alexander Hirsch, Christian Knackstedt, Wouter P Te Rijdt, Marjon A van Slegtenhorst, Arend F L Schinkel and 3 more

Abstract readMulticenter StudyObservational StudyValidation Study
In one paragraph

Observational study in Open heart, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Article
  2. High societal costs and reduced health-related quality of life in inflammatory and systemic immune disease-associated dilated cardiomyopathies.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025
    Article
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

13 authors.

Isabell Wiethoff *Department of Health Services Research, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, The Netherlands.ORCID 0000-0002-2608-2900
Stephan A C Schoonvelde *Department of Cardiology, Erasmus MC, Cardiovascular Institute, Thorax Center, Rotterdam, The Netherlands s.schoonvelde@erasmusmc.nl.ORCID 0000-0001-6235-016X
Rudolf A de BoerDepartment of Cardiology, Erasmus MC, Cardiovascular Institute, Thorax Center, Rotterdam, The Netherlands.
Silvia M A A EversDepartment of Health Services Research, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, The Netherlands.
Tjeerd GermansDepartment of Cardiology, Northwest Clinics, Alkmaar, The Netherlands.ORCID 0000-0003-2781-0145
Alexander HirschDepartment of Cardiology, Erasmus MC, Cardiovascular Institute, Thorax Center, Rotterdam, The Netherlands.ORCID 0000-0002-3315-2006
Christian KnackstedtDepartment of Cardiology, Cardiovascular Research Institute Maastricht (CARIM), Maastricht University Medical Centre, Maastricht, The Netherlands.ORCID 0000-0002-5457-3010
Wouter P Te RijdtDepartment of Clinical Genetics, Erasmus MC, Cardiovascular Institute, Rotterdam, The Netherlands.
Marjon A van SlegtenhorstDepartment of Clinical Genetics, Erasmus MC, Cardiovascular Institute, Rotterdam, The Netherlands.
Arend F L SchinkelDepartment of Cardiology, Erasmus MC, Cardiovascular Institute, Thorax Center, Rotterdam, The Netherlands.
Peter-Paul ZwetslootDepartment of Cardiology, Erasmus MC, Cardiovascular Institute, Thorax Center, Rotterdam, The Netherlands.
Michelle MichelsDepartment of Cardiology, Erasmus MC, Cardiovascular Institute, Thorax Center, Rotterdam, The Netherlands.
Mickael HiligsmannDepartment of Health Services Research, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, The Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundTo assess the psychometric properties (content validity, reliability and construct validity) of generic and disease-specific health-related quality of life (HRQoL) instruments in patients with hypertrophic cardiomyopathy (HCM) and genotype-positive, phenotype-negative (G+/P-) individuals.

methodsAs part of the multicentre, observational AFFECT-HCM study, HRQoL was measured using the generic EuroQoL-5 Dimension-5 Level (EQ-5D-5L) questionnaire, the Visual Analogue Scale (EQ VAS) and the disease-specific Kansas City Cardiomyopathy Questionnaire (KCCQ). The study included G+/P- individuals and HCM patients. EQ-5D-5L profiles were translated into EQ-5D values (utilities) using the Dutch value set. All instruments were evaluated regarding their general characteristics and health dimensions (content validity). Reliability was assessed using internal consistency (Cronbach's alpha), response rate, floor/ceiling effects (percentage scoring highest/lowest), correlation and level of agreement between instruments (using Bland-Altman plots). Construct validity was assessed using the known-groups method to identify expected differences between relevant groups.

resultsA total of 393 HCM patients and 78 G+/P- individuals were included in the psychometric assessment. Mean EQ-5D value in G+/P- individuals was 0.90 (81 EQ VAS, 93 KCCQ) and in HCM patients 0.84 (75 EQ VAS, 78 KCCQ). Ceiling effects were highest for EQ-5D values (51% in G+P; 32% in HCM), followed by the KCCQ (38% in G+P-; 12% in HCM) and the EQ VAS (8% in G+P-; 5% in HCM). KCCQ and EQ-5D values had the highest correlation (Spearman's ρ=0.77) and showed good overall agreement according to the Bland-Altman plots. In HCM, EQ-5D values showed a slightly biased pattern with EQ-5D values scoring higher than the KCCQ. The KCCQ discriminated more nuances between relevant groups.

conclusionsDue to its simplicity and good overall agreement with the KCCQ-which showed slightly better discrimination-we propose from our data that the EQ-5D-5L is a suitable instrument for the HRQoL assessment in clinical practice in patients with HCM.

Indexed as

Cardiomyopathy, HypertrophicPsychometricsQuality of LifeAdultAgedFemaleHumansMaleMiddle AgedNetherlandsReproducibility of ResultsSurveys and QuestionnairesCardiomyopathy, HypertrophicOutcome Assessment, Health CareQuality of Health Care

Identifiers

PMID40436429
PMCPMC12121577

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

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.