The provision of patient information about nystagmus

Aims: The aims of this study were to evaluate the current provision of patient information about nystagmus in orthoptic clinics in the UK and Ireland and to develop a standardised information pack about nystagmus. Methods: A questionnaire was circulated to orthoptists in the UK and Ireland asking whether they had information to provide to patients with nystagmus, what was included in this information and how it could be improved. Orthoptists were also asked what should be included in a standardised information pack about nystagmus. Results: Two hundred and thirty three orthoptists completed the questionnaire. One-third of responding orthoptists did not have information to provide to patients with nystagmus. Most reported the information available to them included details of support services and physical symptoms. Including information about living with nystagmus at different ages and long-term prognosis were the most common suggestions to improve information about nystagmus. More than half of orthoptists selected all the suggested topics to be included in a standardised information pack, with support services and long-term prognosis most frequently selected. Conclusions: Only 67% of responding orthoptists had information about nystagmus to give to patients or their families. Ways to improve the current information and content considered important by orthoptists were taken into account to create a nystagmus information pack, which is now available online.