title: Difficulties With Goals of the Dutch ICF Activity Inventory: Perceptions of Those With Retinitis Pigmentosa and of Those Who Support Them.
abstract: OBJECTIVE
  To provide a comprehensive overview of the perceived difficulties with visual activities and participation by those with retinitis pigmentosa (RP), and as perceived by those who support people with RP. Further, to examine the performance of the Dutch ICF Activity Inventory (D-AI) using Rasch analysis.
  
  
  METHODS
  Three hundred fifty people with RP and 75 supporters of people with RP provided demographic information and completed the D-AI at goal level (47 goals).
  
  
  RESULTS
  Following removal of four goals, the D-AI behaved well in Rasch analysis, but with limitations to its unidimensionality. The most difficult goals for people with RP related to mobility and to work-related activities. Greater difficulty was associated with higher visual impairment registration status, use of mobility aids, and longer duration of visual impairment. For those with less severe visual loss, goals relating to communicating with people were relatively more difficult. In more severe loss, goals involving good central vision (e.g., dealing with correspondence) were relatively more difficult. The perceptions of supporters matched those of the people with RP relatively well, but with a tendency for supporters to overestimate the difficulty of goals, which related to administration and domestic chores, and to underestimate difficulty with goals relating to communication with people.
  
  
  CONCLUSIONS
  The results indicate important areas of rehabilitation to address in addition to orientation and mobility in those with RP, including work-related activities and goals involving good central vision. Both people with RP and those supporting them could benefit from help addressing difficulties with communication.
authors.affiliation: Visual Function & Physiology Research Group, Anglia Ruskin University, Cambridge, United Kingdom 2Vision & Eye Research Unit, Postgraduate Medical Institute, Anglia Ruskin University, Cambridge, United Kingdom.
authors.forename: Keziah
authors.initials: K
authors.lastname: Latham
authors.affiliation: Vision & Eye Research Unit, Postgraduate Medical Institute, Anglia Ruskin University, Cambridge, United Kingdom 3Sport & Exercise Sciences Research Group, Anglia Ruskin University, Cambridge, United Kingdom.
authors.forename: Mohammad
authors.initials: M
authors.lastname: Baranian
authors.affiliation: Vision & Eye Research Unit, Postgraduate Medical Institute, Anglia Ruskin University, Cambridge, United Kingdom 3Sport & Exercise Sciences Research Group, Anglia Ruskin University, Cambridge, United Kingdom.
authors.forename: Matthew A
authors.initials: MA
authors.lastname: Timmis
authors.affiliation: Vision & Eye Research Unit, Postgraduate Medical Institute, Anglia Ruskin University, Cambridge, United Kingdom.
authors.forename: Shahina
authors.initials: S
authors.lastname: Pardhan
mesh_terms: D000203:Activities of Daily Living; D005260:Female; D006040:Goals; D006801:Humans; D008297:Male; D008875:Middle Aged; D011379:Prognosis; D012174:Retinitis Pigmentosa / Q000534:rehabilitation*; D011795:Surveys and Questionnaires; D014792:Visual Acuity / Q000502:physiology*