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Update in Work Package 4

Quality of Life Questionnaires  QOL-PCD have been translated and are now being used for the azithromycin trial!
(Progress in Work Package 4)

Work Package 4 (WP4) has progressed extremely well this year. The aim of WP4 is to develop and validate PCD- specific health related quality of life questionnaires (QOL-PCD). QOL-PCD have been developed in English and translated into Dutch, Danish and German. They are now being used in the azithromycin clinical trial (WP 5) and are being fully validated in Europe and North America.

Bestcilia participants from SOTON, UNC and UM developed the English versions of QOL-PCD with support from University College Cork and Royal Brompton Hospital. Participation of members of PCD Family Support Group UK and PCD Foundation USA has been vital for the success of this study.

The work has been intensive and by the summer 2014, the age-specific QOL-PCDs (for adults, adolescents, children and the parents of children with PCD) have been translated into Dutch, German and Danish in accordance with international guidelines on health survey development (translation, back-translation, re-evaluation on a group of patients). This complicated procedure is necessary in order to ensure that the questionnaires will be easy to understand, acceptable and complete in each language.

The questionnaires have been tested by patients from England, Germany, Switzerland and Holland, who confirmed that the questionnaires are easy to understand and comprehensively address questions that are important for patients and their families.

Full validation of the English and translated versions is now underway. A large group of PCD patients, including patients participating in the randomized clinical trial of azithromycin, are completing  QOL-PCD in order to confirm the reliability of the translated versions.

Additionally, translation into other languages is now in progress, to allow use of the QOL-PCD in care and research of PCD patients internationally.