An International Study of Emotional Response to Bilateral Vision Loss Using a Novel Graphical Online Assessment Tool

Leber׳s hereditary optic neuropathy usually causes rapid bilateral blindness in young adults, and thus represents a unique and severe psychologic stressor.

We aimed to describe adjustment to this major life event, using a new tool to enhance recall of past affective states by using life event-related context. This is the largest (n = 116 with Leber׳s hereditary optic neuropathy), and first study reporting on the emotional aspects of this nontrauma cause of blindness.

We developed a new online survey tool that allowed study subjects to report their mood over a long period of time, corresponding with dates of relevant life events.

The new method provided data of great richness for qualitative and quantitative analysis. Three groups were identified: a group in which majority of them had severe sadness at the point of vision loss followed by a period of recovery, a group whose sadness had not recovered, and a group for whom vision loss was not a major cause of sadness compared with other life events. We identified numerous factors that were important in psychologic recovery, and premorbid psychologic symptoms were more frequent in those who had not yet recovered.

These data may assist behavioral health providers in identifying patients with vision loss to be at risk of mental health problems and in developing support and treatment interventions. We believe this new method has great potential for studying psychologic adjustment retrospectively.