%0 Journal Article %A Annelies Taelman %A Mieke Boon %A Lieven Dupont %A Trudy Havermans %T Living with primary ciliary dyskinesia %D 2014 %J European Respiratory Journal %P P3676 %V 44 %N Suppl 58 %X We examined the impact of Primary Ciliary Dyskinesia (PCD) on daily life by 1. comparing self-reported and prescribed treatment; 2. investigating barriers and attitudes to treatment and 3. exploring coping styles.Method: Participants completed a questionnaire about treatment, barriers and attitudes to treatment and coping (e.g. active coping, palliative coping, social support).Results: Participants were 39 patients (mean age 33; 26 female) and 25 parents (19 children). Mean FEV1 was 82% (23-108%). Treatment included physiotherapy (adults 74%;children 100%); antibiotics (61;61%); nebulized drugs (59;77%) and inhaler (64;69%). Frequency of treatments varied, e.g. 82% parents reported daily use of nebulizer; e.g. patients reported daily use of nose spray (64%) and physio (46%). Agreement between self-reported and prescribed treatment ranged from 39% for eardrops to 71% for antibiotics and 89% for physio. Barriers to treatment were ‘forgetting’ or ‘wanting to be normal’. Most patients (96%) did not agree with the statement ‘My health will be OK, even if I do not do my treatments when I am supposed to’. Parents (76%) agreed with ‘Having to follow treatments means less freedom in life’. Compared to controls, patients scored higher on all but two coping strategies, parents reported more ‘seeking social support’ and ‘using reassuring thoughts’.Conclusion: Many patients with PCD or parents know and perform the treatment and most are aware of the importance of treatment to keep well. Burden of treatment is related to time and wanting a normal life. Coping in patients with PCD and parents is different from a control group. Insight into perception of PCD treatment and coping styles is important to provide optimal multidisciplinary care. %U