Article Text
Abstract
Objective Herpes simplex keratitis (HSK) is a sight-threatening disease and a leading cause of infectious corneal blindness. Involving patients in setting the research agenda maximises patient benefit and minimises research waste. With no published patient involvement exercises, patients’ priorities in HSK are unclear. The objective of this study is to explore patients' priorities for research in HSK.
Methods A literature review of publications in the year preceding recruitment of patients identified nine domains of research interest. A questionnaire was sent to participants asking them to rank these in order of priority. The ranking results were given a weighted-average score, and a thematic analysis was undertaken for the narrative data.
Results Thirty-seven patients participated in the survey. Top priorities for patients were risk factors for recurrence of infection, diagnostic tests and treatment failure. The narrative data revealed three key clinical needs: difficulties in long-term symptom control, the need for rapid access care in acute infection and the desire for more accessible information.
Conclusion This study highlighted three major issues in our current approach to HSK. First, there may be a misalignment between research efforts and patient priorities. Second, high-quality patient information is not widely available. This may hamper patients’ abilities to make informed decisions and contribute towards research. Third, clinical service priorities are of equal importance to patients as research. Researchers and clinicians are encouraged to address both needs in parallel.
- herpes simplex keratitis
- research priorities
- research agenda
- patient involvement
This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
Statistics from Altmetric.com
Footnotes
Contributors XL and GW: project conceptualisation, methodology, design, patient recruitment, data analysis and manuscript drafting. SK, PM, AP and MQ: are responsible for clinical care of participants, patient recruitment and manuscript review. KS: patient representative, analysis of results and manuscript review. AKD and PS: study design, providing expertise in qualitative analysis, review of manuscript.
Funding XL and AKD receive funding from the Wellcome Trust (grant number 200141/Z/15/Z).
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval The survey design was agreed by the National Institute of Health Research (NIHR) Research Design Service West Midlands and approved by individual hospital’s Research and Development departments.
Provenance and peer review Not commissioned; externally peer reviewed.
Author note This paper is dedicated to the memory of our wonderful colleague, Vinette Cross, who recently passed away.