Male–female differences in quality of life and coping style in patients with Marfan syndrome and hereditary thoracic aortic diseases

Thijssen, Carlijn G E; Doze, Daphne E.; Gökalp, Arjen L.; Timmermans, Janneke; Peters, Jeannette B.; Ven, Laura H. C. Elbers‐van de; Royen, Niels van; Takkenberg, Johanna J.M.; Roos‐Hesselink, Jolien W.; Kimmenade, Roland R.J. van

doi:10.1002/jgc4.1288

Cited by 18 publications

(27 citation statements)

References 37 publications

(73 reference statements)

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“…High level of fatigue was significantly associated with dissatisfaction with vocation, which is in accordance with findings in other studies of women and men with HTADs ( 33 , 34 ), thus indicating that fatigue may impact the ability to work. Working has been shown to improve social conditions, finances, self-esteem, and independence in HTADs, which, in turn, have positive impacts on quality of life ( 10 , 11 ). Reduced ability to work usually means lower incomes and therefore less satisfaction with economic situations.…”

Section: Discussionmentioning

confidence: 99%

“…They found reduced QoL compared with the general population, especially in younger women ( 10 ). In contrast, those with more knowledge about their illnesses, more adequate coping strategies, and better family communication seemed to have fewer symptoms of psychological distress and higher health-related QoL ( 10 , 11 ). They also found reduced health-related QoL among partners of participants with HTAD ( 11 ).…”

mentioning

confidence: 96%

“…Only a small number of studies found associations between QoL levels and biomedical symptoms, such as aorta dissection and/or aortic surgery ( 9 ). Thijssen and colleagues (2020) recently published 2 studies on health-related QoL in adults with HTADs (mostly with MFS) ( 10 , 11 ). They found reduced QoL compared with the general population, especially in younger women ( 10 ).…”

mentioning

confidence: 99%

“…Thijssen and colleagues (2020) recently published 2 studies on health-related QoL in adults with HTADs (mostly with MFS) ( 10 , 11 ). They found reduced QoL compared with the general population, especially in younger women ( 10 ). In contrast, those with more knowledge about their illnesses, more adequate coping strategies, and better family communication seemed to have fewer symptoms of psychological distress and higher health-related QoL ( 10 , 11 ).…”

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confidence: 99%

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Adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome: A cross-sectional study of life satisfaction

Johansen¹,

Velvin²,

Fugl-Meyer³

et al. 2021

JRM

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Objective: To explore life satisfaction among adults with Loeys-Dietz and those with vascular Ehlers-Danlos syndrome. Design: Postal survey in 2018. Participants and methods: Persons with molecularly verified Loeys-Dietz syndrome or vascular Ehlers-Danlos syndrome were recruited through the TRS [AQ2] National Resource Centre for Rare Disorders in Norway. The study used the Life Satisfaction Questionnaire 11, Hospital Anxiety and Depression Scale, Fatigue Severity Scale, and questions about physical activity and disease burden. Descriptive statistics were conducted with Bonferroni corrections. Results: The response rate was 74%, 52 participants, age range 18–68 years, and 58% were women. Only half of the participants were satisfied with their lives as a whole. Participants reported dissatisfaction with vocation, somatic health, and sexual life in particular. Participants with vascular Ehlers-Danlos syndrome (n = 18) were satisfied with more areas of life than those with Loeys-Dietz syndrome (n = 34). Low overall satisfaction was significantly associated with severe fatigue (p = 0.002) and symptoms of anxiety (p = 0.001). Conclusion: This study provides important information about living with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome. Future studies should identify factors that reduce/increase life satisfaction. Professionals in welfare systems need more information about the unique challenges of living with these diagnoses. Guidelines for research and clinical measurements of life satisfaction should be updated.

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Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 96%

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confidence: 99%

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confidence: 99%

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Adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome: A cross-sectional study of life satisfaction

Johansen¹,

Velvin²,

Fugl-Meyer³

et al. 2021

JRM

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“…It is possible that men who participated in our study, when faced with the disease, activated the mechanism of self-enhancement—as a result of a disease, a sick patient gains a higher self-esteem. At present, however, it is thought that this phenomenon has an illusory character, does not prove the authentic change, and may present a denial style of coping [ 27 , 28 ]. This fact is difficult to interpret, as it is not possible to assess whether it is a matter of a real health status or only its perception.…”

Section: Discussionmentioning

confidence: 99%

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

Trawicka

Lewandowska-Walter

Majkowicz

et al. 2022

IJERPH

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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.

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Self-care behaviors and their individual-level determinants in Italian adults with Marfan syndrome: A single-center cross-sectional study

Udugampolage,

Caruso,

Magon

et al. 2024

Applied Nursing Research

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Male–female differences in quality of life and coping style in patients with Marfan syndrome and hereditary thoracic aortic diseases

Abstract: This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

Cited by 18 publications

References 37 publications

Adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome: A cross-sectional study of life satisfaction

Adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome: A cross-sectional study of life satisfaction

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

Self-care behaviors and their individual-level determinants in Italian adults with Marfan syndrome: A single-center cross-sectional study

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