Evidence map›Paper›PMID 35682408›Full record

ArticleInternational journal of environmental research and public health2022

Health-Related Quality of Life of Patients with Marfan Syndrome-Polish Study.

Agnieszka Trawicka, Aleksandra Lewandowska-Walter, Mikołaj Majkowicz, Robert Sabiniewicz, Lidia Woźniak-Mielczarek

Abstract read
In one paragraph

Article in International journal of environmental research and public health, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

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

What it found

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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

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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

1 citing paper in PubMed.

  1. 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

5 authors.

Agnieszka TrawickaDepartment of Pediatric Cardiology and Congenital Heart Diseases, Medical University of Gdansk, 80-211 Gdansk, Poland.ORCID 0000-0002-3462-4036
Aleksandra Lewandowska-WalterInstitute of Psychology, University of Gdansk, 80-339 Gdansk, Poland.
Mikołaj MajkowiczInstitute of Health Science, Pomoranian Academy in Słupsk, 76-200 Słupsk, Poland.
Robert SabiniewiczDepartment of Pediatric Cardiology and Congenital Heart Diseases, Medical University of Gdansk, 80-211 Gdansk, Poland.
Lidia Woźniak-MielczarekDepartment of Pediatric Cardiology and Congenital Heart Diseases, Medical University of Gdansk, 80-211 Gdansk, Poland.ORCID 0000-0002-1238-4369

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: Despite extensive knowledge about the quality of life of people suffering from rare diseases, data on patients with Marfan syndrome (MFS) are scarce and inconsistent. Hence, the problem of assessing the quality of life (QOL) and its relationship with the assessment of which ailments are the most burdensome for these patients is still open. Aim: Comparison of the quality of life of patients with MFS and determination as to which of the reported complaints in patients with MFS are related to the QOL of patients. Methods: The study included 35 patients with MFS and 35 healthy controls, matched for gender and age. In the study, the questionnaire of quality of life assessment SF-36 was used to assess the level of health-related quality of life, as well as an interview of the most severe symptoms reported by patients with MFS. Results: The level of the physical dimension of the QOL (p < 0.001) and limiting of roles due to physical health (p = 0.002), as well as the level of general index of the QOL (p < 0.001), were statistically significantly lower in MFS patients when compared to controls. People from both studied groups do not vary in the scope of pain, vitality, social functioning, limiting the roles due to emotional problems, and state of mind but also in the mental dimension of the health-related quality of life (HRQL). Additionally, there has been a correlation between HRQL and the subjective assessment of the effects of orthopedic, ophthalmic, and cardiological problems in life, as well as lower exercise tolerance in the evaluation of people with MFS and QOL in most areas. Conclusions: Patients with MFS present a reduced QOL in the areas of physical functioning, limiting roles due to physical health, general feeling of general health, the physical dimension of the HRQL, and the general index of the QOL; in these areas, they require careful evaluation, as well as medical and psychosocial assistance.

Indexed as

Cardiovascular SystemMarfan SyndromeHumansPolandQuality of LifeSurveys and Questionnairesaortic aneurysmhealth-related quality of lifeMarfan syndromequality of liferare genetic diseases

Identifiers

PMID35682408
PMCPMC9180829

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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.