title: Work participation in adults with Marfan syndrome: Demographic characteristics, MFS related health symptoms, chronic pain, and fatigue.
abstract: 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.
authors.affiliation: Sunnaas Rehabilitation Hospital, TRS National Resource Centre for Rare Disorders, Norway.|Department of Social Work, Child Welfare and Social Policy, Faculty of Social Sciences, Oslo and Akershus University College of Applied Sciences, Norway.
authors.forename: Gry
authors.initials: G
authors.lastname: Velvin
authors.affiliation: Sunnaas Rehabilitation Hospital, TRS National Resource Centre for Rare Disorders, Norway.
authors.forename: Trine
authors.initials: T
authors.lastname: Bathen
authors.affiliation: Sunnaas Rehabilitation Hospital, TRS National Resource Centre for Rare Disorders, Norway.|Faculty of Medicine, Institute of Clinical Medicine, University of Oslo, Norway.
authors.forename: Svend
authors.initials: S
authors.lastname: Rand-Hendriksen
authors.affiliation: Department of Social Work, Child Welfare and Social Policy, Faculty of Social Sciences, Oslo and Akershus University College of Applied Sciences, Norway.
authors.forename: Amy Østertun
authors.initials: AØ
authors.lastname: Geirdal
mesh_terms: D000328:Adult; D000368:Aged; D059350:Chronic Pain / Q000175:diagnosis / Q000209:etiology*; D003430:Cross-Sectional Studies; D005191:Family Characteristics; D005221:Fatigue / Q000175:diagnosis / Q000209:etiology*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008382:Marfan Syndrome / Q000150:complications* / Q000453:epidemiology / Q000523:psychology; D008875:Middle Aged; D009664:Norway; D010358:Patient Participation; D015995:Prevalence; D011379:Prognosis; D011788:Quality of Life; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D014937:Work; D055815:Young Adult
keywords: Marfan related health problems; c; demographic characteristics; fatigue; hronic pain; work participation