Update in WP4
PCD-Specific Quality of Life Questionnaires continue to progress! Work Package 4 (WP4) has developed and translated PCD- specific health related quality of life questionnaires (QOL-PCD) which are now being validated across Europe and North America. Over 240 patients and their families helped develop the questionnaires and more patients are currently participating in the validation.
(Progress in Work Package 4)
BESTCILIA researchers have developed and are now validating PCD- specific health related quality of life questionnaires (QOL-PCD) for adults, adolescents, children and parents of children with PCD. WP4 researchers worked in close cooperation with 243 PCD patients and families from UK, Ireland and North America to ensure that the questionnaires are acceptable for use across English-speaking countries. An explanation of how the adult version was developed will shortly feature in the European Respiratory Journal.
QOL-PCD have been translated from English into German (including Swiss German), Dutch and Danish. A robust translation process ensured that the questionnaires are easy to understand and mean the same thing in the different languages. The questionnaires are now being translated into Greek, Italian and French with plans for completion in summer 2015.
Validation of QOL-PCD is progressing well. Over 300 PCD patients are needed to complete QOL-PCD via electronic or ‘pen and paper’ formats at several different time points and when experiencing PCD- related exacerbation. This will allow assessment of the reliability and responsiveness of the questionnaires. Validation will be completed by December 2015.