Satisfaction with life in adults with Marfan syndrome (MFS): associations with health-related consequences of MFS, pain, fatigue, and demographic factors

Velvin, Gry; Bathen, Trine; Rand‐Hendriksen, Svend; Geirdal, Amy Østertun

doi:10.1007/s11136-015-1214-1

Cited by 32 publications

(70 citation statements)

References 64 publications

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“…The diagnosis was either self‐reported or not described in the study. Five studies reported only on patients with MFS according to Ghent 1 nosology. Five studies included only patients assessed according to the revised Ghent nosology (Ghent 2).…”

Section: Resultsmentioning

confidence: 99%

“…Short Form Medical Survey (SF‐36) was used in 10 of the 17 papers dealing with adults and two studies used Short Form Medical survey (SF‐12). Three studies used the Satisfaction with Life Scale (SWLS), one the Ferrans and Power Quality of life Index, cardiac version (QLI, cardiac III), and one used the Ferrans QLI . Two of the studies with children with MFS used the Pediatric Quality of Life Inventory (PedsQL) and one study used KINDL‐R Questionnaire .…”

Section: Resultsmentioning

confidence: 99%

“…Two of the studies with children with MFS used the Pediatric Quality of Life Inventory (PedsQL) and one study used KINDL‐R Questionnaire . Four studies emphasize the importance of developing disease‐specific scales for measuring the specific influence of the disease on QoL in these conditions. No such diagnoses specific scales have been identified in the included papers.…”

Section: Resultsmentioning

confidence: 99%

“…Twelve studies found decreased QoL in MFS compared to general population (GP), but the results were divergent and conflicting. Figure shows a comparison of the results from the 12 papers using SF‐36 or SF‐12 of the 17 papers of adults with MFS.…”

Section: Resultsmentioning

confidence: 99%

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Systematic review of quality of life in persons with hereditary thoracic aortic aneurysm and dissection diagnoses

et al. 2019

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The purpose of this study was to explore the literature on quality of life (QoL) in patients with hereditary thoracic aortic aneurysm and dissection (HTAAD); including Marfan syndrome (MFS), Loeys‐Dietz syndrome (LDS), vascular Ehlers‐Danlos syndrome (vEDS) and other HTAAD diagnoses, critically appraising and synthesizing the relevant literature. A systematic review was performed by searching the published literature using available medical, physical, psychological, social databases and other sources. Studies addressing QoL in persons with an HTAAD diagnosis, published in peer‐reviewed journals were assessed. Of 227 search results, 20 articles satisfied the eligibility criteria. No studies of QoL in LDS, vEDS, or other HTAAD were found, only on MFS. Most studies had been published in the last 3 years. All were cross‐sectional quantitative studies besides one pilot intervention study. Most studies were of small sample size, had low response rate or participants without verified diagnosis. Despite these limitations, most studies indicate that having an HTAAD diagnosis as MFS may negatively impact QoL, but few studies found any associations between the biomedical symptoms and decreased QoL. More research is needed on QoL in samples with verified HTAAD diagnosis to develop evidence‐based knowledge and appropriate guidelines for these diagnoses.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Systematic review of quality of life in persons with hereditary thoracic aortic aneurysm and dissection diagnoses

et al. 2019

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“…The results showed that MSD and the levels of depression were significantly greater in these mothers than in control groups. The same applied to adults with Marfan syndrome [106]. Finally, Ogwumike et al [107] investigated musculoskeletal pain in post-menopause women in Nigeria.…”

Section: Pathologies Health and Ageingmentioning

confidence: 99%

Applications of the Standardized Nordic Questionnaire: A Review

et al. 2017

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Sustainability seeks to provide economically viable products in an environmentally friendly way while respecting worker rights. Physical wellbeing forms part of these rights. Musculoskeletal disorders (MSD) diminish productivity, cause absence from work, impose costs on the public health system and can cast doubt on the sustainability of a company or a product. The objective of the present work is to review the literature on the application of the Nordic Musculoskeletal Questionnaire (NMQ) on a worldwide level. In this work, the use of the NMQ has been classified by categories of knowledge, countries and years. The search was made using "Web of Science-Core Collection". In total, 259 articles were chosen from scientific journals and conferences related, according to the title and or abstract, to the practical application of the questionnaire. In conclusion, the NMQ has been applied mainly in three sectors: "activities related to treating human health and social issues", "manufacturing industries", and "agriculture, livestock, fishing, and forestry". The NMQ is an indirect method commonly used individually or complemented with other methods for evaluating the MSD and possible associated psychosocial and labour risks. The use of NMQ can help in the evaluation of the sustainability of a company.

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Adults with Loeys–Dietz syndrome and vascular Ehlers–Danlos syndrome: A cross‐sectional study of health burden perspectives

Johansen

Velvin

Lidal

2019

American J of Med Genetics Pt A

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The aim is to study adults with vascular Ehlers-Danlos syndrome (vEDS) and Loeys-Dietz syndrome (LDS) with regard to sociodemographic characteristics, perceived vascular-and multi-organ symptom burdens, and health services utilization. This is a cross-sectional study. In 2018, a postal questionnaire was sent to 71 individuals with genetically verified LDS types 1-4 or vEDS, age ≥ 18 years, recruited through a National Resource Centre for Rare Disorders in Norway. Eighteen patients with vEDS and 34 patients with LDS subtypes 1-4 participated, the response rate was 74%. Median age was 43.5 (range 18-68) years, and 58% were women. Median age at diagnosis was 34 years (range: 6-63). Severe vascular-and multi-organ symptom burdens were found, and chronic pain was reported by 79%. Most respondents (87%) had cardiovascular surveillance visits, 58% yearly or more often, and still 29% had no antihypertensive medications. Three quarters communicated diagnosis-related concerns with their general practitioner. A considerable group (31%) had left work before retirement age. Healthcare professionals should be aware of the spectrum of health burden in adults with vEDS and LDS. A verification of the diagnosis is crucial to counseling, including medical follow-up, education, and work, and advices on precaution and life style decisions. K E Y W O R D S life experiences, Loeys-Dietz syndrome, vascular and multi-organ symptom burden, vascular Ehlers-Danlos syndrome

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Satisfaction with life in adults with Marfan syndrome (MFS): associations with health-related consequences of MFS, pain, fatigue, and demographic factors

Cited by 32 publications

References 64 publications

Systematic review of quality of life in persons with hereditary thoracic aortic aneurysm and dissection diagnoses

Systematic review of quality of life in persons with hereditary thoracic aortic aneurysm and dissection diagnoses

Applications of the Standardized Nordic Questionnaire: A Review

Adults with Loeys–Dietz syndrome and vascular Ehlers–Danlos syndrome: A cross‐sectional study of health burden perspectives

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