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New Bestcilia publication: new quality-of-life measure for adult PCD patients

The prestigious European Respiratory Journal recently published a noteworthy article regarding the development of Health-Related Quality of Life Questionnaires (QOL-PCD), the achievement of Bestcilia Work Package 5. QOL-PCDs are a specific tool for assessing quality of life in adult PCD patients. Given that the existing, general QOL questionnaires have a number of limitations as regards the effects of PCD on daily functioning, this accomplishment of Bestcilia consortium allows assessing how PCD impacts various spheres of life from the patients’ perspective.

The article was authored by several Bestcilia participants: the University of Miami and the University of North Carolina in the USA and the University Hospital of Southampton in UK, with help from PCD support groups from the USA (PCD Foundation) and the UK (PCD Family Support Group). The authors began by conducting interviews with PCD patients from different English-speaking countries (the UK, the USA, Canada), in order to find out how PCD and related treatment affect such areas as physical and emotional condition or patients’ relationships with other people. The interviews were used to identify a spectrum of issues exclusive for the adult PCD patient group. The final questionnaire includes seven domains: Physical Functioning, Emotional Functioning, Treatment Burden, Respiratory and Sinus Symptoms, Ears and Hearing, Social Functioning, and Vitality and Health Perceptions. The developed questionnaires were later tested on a group of patients, who confirmed that the contents of the questionnaire were comprehensive, valid and easily understood. As the next step of the work, the authors are planning multi-national psychometric tests, which will assess the validity and reliability of the questionnaire.

The QOL-PCD questionnaire is a great success of the Bestcilia consortium and a big step towards developing a standard tool for assessing how PCD affects patients’ QOL. The questionnaire has already been translated into German, Dutch and Danish, with plans to include both major European and Middle Eastern countries in the translation procedure. This will allow the work of Bestcilia consortium to aid PCD patients across the continent and even beyond its reach.

Full article can be accessed here.