Work participation in adults with Marfan syndrome: Demographic characteristics, MFS related health symptoms, chronic pain, and fatigue

Am J Med Genet A. 2015 Dec;167A(12):3082-90. doi: 10.1002/ajmg.a.37370. Epub 2015 Sep 30.


Marfan syndrome (MFS) is a severe autosomal dominant connective tissue disorder that might influence peoples work ability. This cross sectional study aims to investigate work participation in adults with verified MFS diagnosis and to explore how the health related consequences of MFS and other factors might influence work participation. The prevalence of health problems in young adults compared to older adults with MFS was examined in association to work participation. A postal questionnaire including questions about work participation, demographic characteristics, MFS related health problems, chronic pain, and fatigue was sent to 117 adults with verified MFS (Ghent 1), and 62% answered. Fifty-nine percent were employed or students, significantly lower work participation than the General Norwegian Population (GNP), but higher than the Norwegian population of people with disability. Most young adults worked full-time despite extensive health problems, but the average age for leaving work was low. Few had received any work adaptations prior to retiring from work. In multiple logistic regression analysis, only age, lower educational level and severe fatigue were significantly associated with low work participation; not MFS related health problems or chronic pain. Fatigue appears to be the most challenging health problem to deal with in work, but the covariance is complex. Focus on vocational guidance early in life, more appropriate work adaptations, and psychosocial support might improve the possibility for sustaining in work for adults with MFS. More research about work challenges in adults with MFS is needed.

Keywords: Marfan related health problems; c; demographic characteristics; fatigue; hronic pain; work participation.

MeSH terms

  • Adult
  • Aged
  • Chronic Pain / diagnosis
  • Chronic Pain / etiology*
  • Cross-Sectional Studies
  • Family Characteristics
  • Fatigue / diagnosis
  • Fatigue / etiology*
  • Female
  • Follow-Up Studies
  • Humans
  • Male
  • Marfan Syndrome / complications*
  • Marfan Syndrome / epidemiology
  • Marfan Syndrome / psychology
  • Middle Aged
  • Norway
  • Patient Participation*
  • Prevalence
  • Prognosis
  • Quality of Life*
  • Severity of Illness Index
  • Surveys and Questionnaires
  • Work*
  • Young Adult