Gummer, Sarah, Evans, Megan J.E., Cygan, Alex, Osborne, Daniel, Griffiths, Helen, Lee, Helena and Self, James (2019) Evaluating the impact of information and support for people with nystagmus in the digital age: a patient and carer questionnaire study. Current Eye Research. (doi:10.1080/02713683.2019.1696978).
Abstract
Background: nystagmus is a disorder of rhythmic, involuntary oscillations of the eyes and can be classified aseither infantile or acquired. Whether it occurs in isolation or as a part of other visual or neurological disorders, itcauses significant visual dysfunction and problems with social functioning. In this study, we seek to understandways in which people with nystagmus are currently supported across the UK and identify any geographicalvariations or disconnects between current practice and best practice, as judged by patients and their carers.
Methods: a nationwide, qualitative, cross-sectional, questionnaire study of people with nystagmus andtheir carers. Recruitment was achieved through specialist clinics, charity events, online advertisementsand social media calls. Data was gathered using five, age-appropriate questionnaires which werecompleted and returned to the research team between November 2016 and August 2018.
Results: 184 respondents were included (89 carers, 47 patients aged 4–10 years, 5 aged 11–14 years, 4aged 15–17 years and 39 > 18 years). Notably, respondents rated social media as the best source ofinformation they have received, even compared with face-to-face consultation with medical professionals. Additionally, only 33% of the respondents had been offered visual impairment support. Notably,patterns of clinical practice and patient experience emerged according to geographical location,particularly provision of initial information and ongoing VI support.
Conclusions: this study highlights a significant variation in the support and information received bypeople in the UK with nystagmus. It also supports the role of charities and increasingly, social media inthe provision of patient information. The study also highlights the need for standardized guidelines forthe management of patients with nystagmus, particularly with regard to support and information.
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