Evaluation of the Nystagmus Information Pack

Introduction: In response to the need for easily accessible, high-quality information about nystagmus, the Nystagmus Information Pack was created and made freely available online in 2017. This study was undertaken to evaluate the content and accessibility of the Nystagmus Information Pack.

Methods: Clinicians, eye clinic liaison officers (ECLOs), teachers, patients, families, and any person with an interest in nystagmus were invited to complete an online questionnaire about the content and accessibility of the Nystagmus Information Pack.

Results: One hundred and sixty respondents completed the questionnaire. Respondents who had previously accessed the Nystagmus Information Pack (n = 49, 30.6%) reported the content was appropriate (86%), of sufficient detail (94%), and easy to understand (88%). Minor suggestions were made to improve the content. Respondents who had not accessed the Nystagmus Information Pack (n = 111, 69.4%) reported not being aware of the resource (90%) but had already accessed nystagmus information from a wide range of sources. Poor vision was a barrier to accessing the resource for a small number of respondents (4.5%).

Conclusion: Some improvements to the content and accessibility of the Nystagmus Information Pack should be considered, in particular the format options in which it is available, to enable access in preferred formats and with poor vision. The availability of the Nystagmus Information Pack should be promoted and shared more widely, as the majority of respondents were unaware of the resource despite having an association with or interest in nystagmus.