Difficulties With Goals of the Dutch ICF Activity Inventory: Perceptions of Those With Retinitis Pigmentosa and of Those Who Support Them

PURPOSE: 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.