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Quality of Life Research

, Volume 25, Issue 7, pp 1779–1790 | Cite as

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

  • Gry VelvinEmail author
  • Trine Bathen
  • Svend Rand-Hendriksen
  • Amy Østertun Geirdal
Article

Abstract

Purpose

The 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.

Methods

This 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.

Results

The 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.

Conclusions

The 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.

Keywords

Satisfaction with life Marfan syndrome Health symptoms and demographic factors 

Notes

Acknowledgments

The authors want to thank all persons with MFS who participated in this study, as well as the Norwegian Marfan Foundation, Sophies Minde Foundation, the TRS National Resource Centre for Rare Disorders, and the Sunnaas Rehabilitation Hospital.

Compliance with ethical standards

Conflict of interest

All authors have no conflict of interest.

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Copyright information

© Springer International Publishing Switzerland 2016

Authors and Affiliations

  • Gry Velvin
    • 1
    • 2
    Email author
  • Trine Bathen
    • 1
  • Svend Rand-Hendriksen
    • 1
    • 3
  • Amy Østertun Geirdal
    • 2
  1. 1.TRS National Resource Centre for Rare DisordersSunnaas Rehabilitation HospitalNesoddtangenNorway
  2. 2.Department of Social Work, Child Welfare and Social Policy, Faculty of Social SciencesOslo and Akershus University College of Applied SciencesOsloNorway
  3. 3.Faculty of Medicine, Institute of Clinical MedicineUniversity of OsloOsloNorway

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