%0 Journal Article %A Tomaso Morelli %A Audrey DunnGalvin %A Neil Botting %A Woolf Walker %A Amanda Harris %A Fiona Copeland %A Claire Hogg %A Jane Lucas %T The impact of primary ciliary dyskinesia on health related quality of life in children, adolescents and parents %D 2013 %J European Respiratory Journal %P P1235 %V 42 %N Suppl 57 %X OverviewPrimary Ciliary Dyskinesia (PCD) is a rare autosomal recessive condition characterised by pulmonary infections, rhinosinusitis, glue ear, and subfertility. We are developing a health related quality of life (HRQoL) instrument for children and adolescents with PCD, as well as a parent proxy. This process has yielded insights into how PCD can impact differently in these groups.MethodsInterviews with patients, parents, health experts and a literature review were used to generate items important in PCD. Questionnaires were sent to each group to score item relevance. Children responded using a visual analogue scale, whilst adolescents and parents responded on a Likert scale (1 to 5= ‘not at all’ to ‘very relevant’). Mean values for each item were calculated.Results95 questionnaires were returned. Children highlighted symptoms as being very relevant to HRQoL e.g. “snot coming from my nose makes me feel” (mean=4.56); social implications also scored highly e.g. “lots of people do not understand PCD” (mean=4.38). Highly scored adolescent items included “embarrassment from coughing” (mean=3.71).Parents ranked treatment and treatment burden as highly relevant to their child’s HRQoL e.g. “my doctor provides good care” (mean=4.18). Questions regarding their child’s future had the greatest impact on parents’ HRQoL, e.g. “I am worried about my child’s future” (mean=4.51).ConclusionsChildren and adolescents cited symptoms as being most relevant to HRQoL while the impact of treatment scored less highly. Parents overestimated the relevance of treatment on their child’s HRQoL, while worries about their child’s future were scored as highly relevant to the parents’ HRQoL. %U https://erj.ersjournals.com/content/erj/42/Suppl_57/P1235.full.pdf