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Methods Seventy-eight items important for QoL in PCD were generated by patients, health-specialists and a literature review. To reduce the list to the most relevant items, it was sent to adult members of the PCD Support Group, European PCD Taskforce and Southampton patients. 49 questionnaires were returned, with each item ranked on a 5-point Likert scale (1=not at all relevant, 5=very relevant). Mean values for each item were calculated.

Development of a health related quality of life questionnaire for adult patients with Primary Ciliary Dyskinesia