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. 2018 May 10;14(1):25-29.
doi: 10.22599/bioj.105.

The Provision of Patient Information about Nystagmus

Anne Bjerre  1 , Gemma E Arblaster  1 , Arthur Nye  1 , Helen J Griffiths  1
Affiliations

The Provision of Patient Information about Nystagmus

Anne Bjerre et al. Br Ir Orthopt J. .

Abstract

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.

Keywords: nystagmus; patient information; questionnaire.

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Conflict of interest statement

The authors have no financial interest to declare in the study or the Nystagmus Information Pack. The Nystagmus Information Pack is available without charge and may be used in its unaltered entirety without restriction at https://www.sheffield.ac.uk/oncology-metabolism/research/ophthalmology-orthoptics/research/nystagmusinfo. If the Nystagmus Information Pack is used for research purposes, it should be referenced as: https://www.sheffield.ac.uk/oncology-metabolism/research/ophthalmology-orthoptics/research/nystagmusinfo.

Figures

Figure 1
Figure 1
The percentage responses to the questions “In what ways is the leaflet/information pack useful?” (solid black bars) and “In what ways could the leaflet/information pack be improved?” (hatched bars).
Figure 2
Figure 2
The percentage responses to the question “If standardised nystagmus information was developed, what information would be useful to include?”.
See this image and copyright information in PMC

References

    1. Barber, J, Puryer, J, McNally, L and O’Sullivan, D. 2015. The contents of dental implant patient information leaflets available within the UK. British Dental Journal, 218(4): E7–E7. DOI: 10.1038/sj.bdj.2015.99 - DOI - PubMed
    1. Barlow, JH, Turner, AP, and Wright, CC. 1998. Long-term outcomes of an arthritis self-management programme. British Journal of Rheumatology, 37: 1315–1319. DOI: 10.1093/rheumatology/37.12.1315 - DOI - PubMed
    1. Brown, SA. 1998. Effects of educational interventions in diabetes care: a meta-analysis of findings. Nursing Research, 37: 223–230. - PubMed
    1. Clark, NM and Nothwehr, F. 1997. Self-management of asthma by adult patients. Patient Education and Counseling, 32(1): S5–S20. DOI: 10.1016/S0738-3991(97)00092-X - DOI - PubMed
    1. Colledge, A, Car, J, Donnelly, A and Majeed, A. 2008. Health information for patients: time to look beyond patient information leaflets. Journal of the Royal Society of Medicine, 101(9): 447–453. DOI: 10.1258/jrsm.2008.080149 - DOI - PMC - PubMed

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