ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2016
Satisfaction with life in adults with Marfan syndrome (MFS): associations with health-related consequences of MFS, pain, fatigue, and demographic factors.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis that pooled it.
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Who cites it
22 citing papers in PubMed, 1 synthesis or guideline pooled it, 49 citations in OpenAlex.
- Fatigue in patients with syndromic heritable thoracic aortic disease: a systematic review of the literature and a qualitative study of patients' experiences and perceptions.Orphanet journal of rare diseases · 2023Pooled it
- A personalized home-based exercise training program in children with Marfan and Loeys-Dietz syndromes improves aerobic exercise capacity and health-related quality of life.Orphanet journal of rare diseases · 2026Trial
- Health-Related Quality of Life in Children and Young Adults with Marfan Syndrome.The Journal of pediatrics · 2019Trial
- Introducing Allopurinol to the Medical Treatment of Marfan Syndrome: Advantages, Limitations, and Potential Extension to other Aortopathies.Cardiovascular drugs and therapy · 2026Review
- Exploring patient experiences of pain fatigue and physical activity in syndromic heritable thoracic aortic disease using mixed methods.Scientific reports · 2025Article
- Quality of life in people with syndromic heritable thoracic aortic disease and their relatives: a qualitative interview based study.Orphanet journal of rare diseases · 2025Article
- Health-related quality of life in children and adolescents with Marfan syndrome or related disorders: a controlled cross-sectional study.Orphanet journal of rare diseases · 2024Article
- Marfan Syndrome: Enhanced Diagnostic Tools and Follow-up Management Strategies.Diagnostics (Basel, Switzerland) · 2023Review
- Work participation in adults with rare genetic diseases - a scoping review.BMC public health · 2023Article
- Discussing psychological and psychotherapeutic support for patients with Marfan syndrome (MFS) and their family: an example of a structured program in Italy.Frontiers in psychology · 2023Article
- A cross-sectional study on fatigue, anxiety, and symptoms of depression and their relation with medical status in adult patients with Marfan syndrome. Psychological consequences in Marfan syndrome.Clinical genetics · 2022Article
- Health-Related Quality of Life of Patients with Marfan Syndrome-Polish Study.International journal of environmental research and public health · 2022Article
- A comprehensive description of self-reported health and life satisfaction in cardiac arrest survivors.Scandinavian journal of trauma, resuscitation and emergency medicine · 2021Observational
- Association between subjective well-being and perception of medical care system among patients with Marfan syndrome: A cross-sectional study.Molecular genetics & genomic medicine · 2021Article
- Parenting a child with Marfan syndrome: Distress and everyday problems.American journal of medical genetics. Part A · 2021Article
- Is SF-12 a valid and reliable measurement of health-related quality of life among adults with Marfan syndrome? A confirmatory study.PloS one · 2021Article
- Health-related quality of life in Marfan syndrome: a 10-year follow-up.Health and quality of life outcomes · 2020Article
- Perceived Need for Psychosocial Support After Aortic Dissection: Cross-Sectional Survey.Journal of participatory medicine · 2020Article
- A Review of Psychosocial Factors of Marfan Syndrome: Adolescents, Adults, Families, and Providers.Journal of pediatric genetics · 2019Review
- Marfan syndrome in childhood: parents' perspectives of the impact on daily functioning of children, parents and family; a qualitative study.BMC pediatrics · 2019Article
Corrections and comments
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Authors and funding
4 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeThe objective with this study was to explore satisfaction with life (SWL) among adults with Marfan syndrome (MFS) compared to the general Norwegian population and other patient groups and further to examine the associations between SWL and demographic factors, contact with social and health services, MFS-related health problems, chronic pain, and fatigue.
methodsThis is a cross-sectional study with postal questionnaire, including the Satisfaction with Life Scale (SWLS), questions on demographic factors, health-related aspects of MFS, and validated instruments measuring chronic pain (Standardized Nordic Questionnaire) and fatigue (Fatigue Severity Scale). One hundred and seventeen adults with MFS were invited to participate, and 73 (62 %) participated.
resultsThe SWLS mean score in adults with MFS was significantly lower than that reported for the general Norwegian population, but similar to or higher than that reported for other patient groups. Only fatigue, aortic dissection, and having regular contact with psychologist showed significant unique contribution to the SWLS score in the hierarchical multiple linear analyses. The total variance explained by the model was 45.2 % p ≤ 0.000, confirming that the combination of independent variables significantly predicted SWLS.
conclusionsThe results reflect that MFS influences people's SWL and that particularly severe fatigue, aortic dissection, and psychological aspects are associated with lower SWL. This is important to take into account in the clinical work with people with MFS. Further investigation is needed, especially on larger sample groups. Studies with combination of qualitative and quantitative approaches are recommended to obtain more comprehensive and accurate knowledge about the consequences of MFS on satisfaction with life.
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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.