title: Health and participation problems in older adults with long-term disability.
abstract: More attention and understanding of the health and participation problems of adults with early and later onset disabilities in the Netherlands is needed.
  
  
  
  To explore health/participation problems and unmet needs in adults aged ≥40 years with long-term disabilities and their relationship with the time of onset.
  
  
  
  Participants were recruited in the Netherlands through newsletters and social media to participate in a web-based questionnaire. The questionnaire assessed background characteristics, (change in) health/participation problems, and unmet needs. Spearman's rho was used to examine the relationships with time of onset.
  
  
  
  Of the 163 survey respondents, 42% acquired their disability before age 25 years and reported fatigue (77%), walking problems (66%), and pain (59%). In 21% of the respondents with early-onset disability fatigue, pain and depressive feelings co-occurred. Early-onset disability correlated with joint deformities, pain and anxiety. Participation problems included loss of income and fewer social activities. Early-onset correlated with the need for more information about diagnosis and prognosis.
  
  
  
  People aged over 40 years with long-term disability have significant and increasing health and participation problems. Adults with early-onset disability are more likely to have health or participation problems than adults with late-onset disability. Early identification is needed for preventive care and access to specialized services that focus on improving and maintaining physical symptoms, energy management, and participation.
authors.affiliation: BOSK, Association of Physically Disabled Persons, Utrecht, The Netherlands. Electronic address: s.r.hilberink@hetnet.nl.
authors.forename: Sander R
authors.initials: SR
authors.lastname: Hilberink
authors.affiliation: Rijndam Rehabilitation Institute, Rotterdam, The Netherlands; Department of Rehabilitation Medicine, Erasmus University Medical Center, Rotterdam, The Netherlands.
authors.forename: Wilma M A
authors.initials: WMA
authors.lastname: van der Slot
authors.affiliation: BOSK, Association of Physically Disabled Persons, Utrecht, The Netherlands.
authors.forename: Martijn
authors.initials: M
authors.lastname: Klem
mesh_terms: D022126:Access to Information; D000328:Adult; D017668:Age of Onset; D000368:Aged; D000369:Aged, 80 and over; D001007:Anxiety; D003863:Depression; D006233:Persons with Disabilities / Q000523:psychology; D005221:Fatigue; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007182:Income; D007596:Joints / Q000002:abnormalities; D008297:Male; D008875:Middle Aged; D051346:Mobility Limitation; D009426:Netherlands; D010146:Pain; D012934:Social Isolation; D011795:Surveys and Questionnaires; D013997:Time Factors; D016138:Walking
keywords: Aging; Health problems; Long-term disability; Participation