Methods

Study design

The study was designed as a cross-sectional survey of the experience of people affected by olfactory disorders in accessing medical care. A survey questionnaire was developed using a focus group meeting of the public, patients and clinicians. The survey was then set live online and ran for 16 weeks. It was promoted via social media internationally. As the survey was anonymous, there was no ethical approval sought. As a small charity, Fifth Sense does not have a research ethics committee, nor is it required to by our regulatory body but the board of trustees gave our full approval for the views of our beneficiaries to be captured in this way.

Setting

The survey was open to anyone globally with access to the world wide web and declaring themselves an affected individual and was promoted through social media channels including the Fifth Sense website, and its Facebook and Twitter accounts. The survey was launched via the website with the following introduction: