Evidence map›Paper›PMID 33968637›Full record

ArticleCardiovascular diagnosis and therapy2021

Quality of life in patients with Marfan syndrome: a cross-sectional study of 102 adult patients.

Caroline Andonian, Sebastian Freilinger, Stefan Achenbach, Peter Ewert, Ulrike Gundlach, Harald Kaemmerer, Nicole Nagdyman, Rhoia Clara Neidenbach, Lars Pieper, Jörg Schelling and 2 more

Abstract read
In one paragraph

Article in Cardiovascular diagnosis and therapy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.

0numbers the graph read from it
0cells of the map it votes in
11citing 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

11 citing papers in PubMed.

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  11. Health-Related Quality of Life of Patients with Marfan Syndrome-Polish Study.International journal of environmental research and public health · 2022
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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

12 authors.

Caroline AndonianDepartment of Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University Munich, Munich, Germany.
Sebastian FreilingerDepartment of Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University Munich, Munich, Germany.
Stefan AchenbachDepartment of Cardiology, University of Erlangen, Erlangen, Germany.
Peter EwertDepartment of Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University Munich, Munich, Germany.
Ulrike GundlachDepartment of Cardiology, University of Erlangen, Erlangen, Germany.
Harald KaemmererDepartment of Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University Munich, Munich, Germany.
Nicole NagdymanDepartment of Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University Munich, Munich, Germany.
Rhoia Clara NeidenbachDepartment of Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University Munich, Munich, Germany.
Lars PieperDepartment of Behavioral Epidemiology, Technical University of Dresden, Dresden, Germany.
Jörg SchellingFaculty of Medicine, Ludwig Maximilians University (LMU) of Munich, Munich, Germany.
Michael WeyandDepartment of Cardiology, University of Erlangen, Erlangen, Germany.
Jürgen BeckmannDepartment of Sport and Health Sciences, Chair of Sport Psychology, Technical University Munich, Munich, Germany.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundMarfan syndrome (MFS) is a genetically determined multiorgan disease that leads to severe physiological and psychological impairments in adult life. Little consensus exists regarding quality of life (QOL) in individuals with MFS. The present study sought to investigate QOL in a representative cohort of adults with MFS.

methodsPatient-reported outcome measures from a representative sample of 102 adults with MFS (39.3±13.1 years of age; 40.2% female) were retrospectively analyzed and compared with those from adults with different congenital heart defects (CHD), at the German Heart Center Munich. QOL was assessed using the updated five-level version of the EQ-5D.

resultsDifferences between both populations were analyzed. Subjects affected by MFS reported an overall reduced QOL. Compared to CHD patients, individuals with MFS scored significantly lower in the dimensions of pain/discomfort, anxiety/depression, mobility and usual activities (P<0.05).

conclusionsPatients with MFS are at high risk for impaired QOL, especially in mental and physical domains. Psychosocial consequences of MFS cost resources for both, patients and professionals. Current findings highlight the great importance of additional psychological support to cope with disease-related challenges. Increased attention should be directed towards enhancing their subjective wellbeing to potentially improve their QOL and long-term health outcomes.

Indexed as

EQ-5DMarfan syndrome (MFS)preventionpsychological situationquality of life

Identifiers

PMID33968637
PMCPMC8102263

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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.