Emotional Health of People with Visual Impairment Caused by Retinitis Pigmentosa

PURPOSE To understand the emotional difficulties associated with living with the ocular condition Retinitis Pigmentosa, and to examine the functioning of a self-report instrument used to assess this construct. METHODS The difficulty of goals and tasks in the emotional health domain of the Dutch ICF Activity Inventory were rated by 166 people with Retinitis Pigmentosa in a cross-sectional study. Demographic factors were also assessed. RESULTS Responses to the 23 emotional health tasks were Rasch analysed and could be used to form either one 20 item overview scale with some multidimensionality, or three unidimensional subscales addressing feelings (4 items), communicating visual loss (5 items) and fatigue (7 items). The most difficult individual tasks related to communicating visual loss to other people, and dealing with feelings such as frustration, anxiety and stress. The use of mobility aids and female gender were associated with increased difficulty with emotional health, explaining 19% of the variance in the overview scale. CONCLUSIONS The emotional health domain of the Dutch ICF Activity Inventory is a valid tool to assess emotional difficulties arising from visual loss. Interventions to aid people with Retinitis Pigmentosa deal with emotional difficulties should particularly address communicating vision loss effectively to others and coping with negative feelings.