title: Expectations of wheelchair-dependency in recently diagnosed patients with multiple sclerosis and their partners.
abstract: The aim of the present paper was to quantify expectations of wheelchair-dependency in patients recently diagnosed with MS (n = 101) and their partners (n = 78). Expectations focused on the risk and seriousness of becoming wheelchair-dependent in 2 years, 10 years or lifetime. Expectations were compared with natural history data, compared between patients and their partners, and related to clinical characteristics. Our results show that patients overestimated their 2-year and 10-year risks of wheelchair-dependency, but underestimated their lifetime risks. A large number of patients were uncertain about their 2-year risk, even those with no or only minimal disability [Expanded Disability Status Scale (EDSS) <3.0]. One-third of the patients perceived the 10-year and lifetime risk to be 50%, which, as they explained in the interviews, reflected their uncertainty: they did not know what to expect - it might happen or not. Patients with more functional limitations had higher perceptions of risk, but lower perceptions of seriousness. Concordance in perceived risk and seriousness between patients and partners was moderate. The overestimation of the short-term risks and the substantial differences in expectations within couples warrant further research on the impact of expectations on their treatment decisions and psychological well-being.
authors.affiliation: Department of Neurology, Erasmus MC, Rotterdam, the Netherlands.
authors.forename: A C J W
authors.initials: AC
authors.lastname: Janssens
authors.forename: J B
authors.initials: JB
authors.lastname: de Boer
authors.forename: P A
authors.initials: PA
authors.lastname: van Doorn
authors.forename: H M
authors.initials: HM
authors.lastname: van ver Ploeg
authors.forename: F G A
authors.initials: FG
authors.lastname: van ver Meché
authors.forename: J
authors.initials: J
authors.lastname: Passchier
authors.forename: R Q
authors.initials: RQ
authors.lastname: Hintzen
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D003430:Cross-Sectional Studies; D003858:Dependency, Psychological; D004185:Disability Evaluation; D018450:Disease Progression; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008017:Life Expectancy; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000175:diagnosis / Q000523:psychology*; D009460:Neurologic Examination; D012306:Risk; D012720:Severity of Illness Index; D012747:Sexual Partners / Q000523:psychology*; D011795:Surveys and Questionnaires; D014910:Wheelchairs / Q000523:psychology*