Background: In 2020, the North of England, adult, Primary Ciliary Dyskinesia (PCD) service was launched. Service aims included increasing awareness of PCD, delivery of education for patients and healthcare providers, access to diagnostics and improving standards of care. A survey was undertaken to assess the level of patient engagement with their treatment as well as pre-existing knowledge of PCD. The aim was to identify future educational needs which could then be used to support improved adherence to treatments.

Method: A paper survey, consisting of 11 questions, was compiled by the multidisciplinary team. Questions covered age of diagnosis, respiratory, ENT and reflux symptoms, inhaled medication usage, knowledge of how to access services during exacerbations, airway clearance, exercise, and nutrition. The survey was distributed in the PCD clinic for anonymous completion.

Results: 29/48 surveys were returned (median age 34 years). Unsurprisingly, cough (100%) and runny nose (96%) were reported as the most common symptoms. 55% were on nebulised therapy, with 69% having some understanding of what these medications were for. 100% of patients reported knowing why they should do airway clearance but not all were able to explain their answers.  14% of subjects did not partake in any physical exercise. 66% of patients were prescribed vitamin D, with 17% reporting adherence issues. 90% of subjects were aware of who to contact during an exacerbation.

Conclusion: The results of this survey provide a greater understanding of the educational needs for adults with PCD, within a newly developing service. Particular areas of focus include developing better knowledge around nebulised therapy, airway clearance, nutrition and exercise.