The Paediatric Asthma Caregiver's Quality of Life Questionnaire in Swedish parents

With the Paediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ), parents grade impaired activities (5 items) and emotional concern (8 items) from 1 to 7 regarding how much their own quality of life (QoL) has been affected by the disease of their child during the last week. The questionnaire was translated into Swedish. To test the feasibility and validity of the Swedish version, 71 asthmatic children and their families were approached. Sixty-one families (86%) participated. The mean age of the children was 8.7 y. Parental grading of symptoms (Spearman's rho = 0.637, p < 0.001), the asthma-specific QoL of the child (rho = 0.359, p = 0.002) and gradings of asthma from medical records (mild asthma median score 6.69, moderate 6.27 and severe 5.12, p = 0.001) were all related to overall PACQLQ scores. The sex of the child, the presence of other diseases related to allergy, peak flow rate (PEFR) and socio-economic level did not affect the scores. Lower scores in the emotional domain were seen in parents of children on steroids (p = 0.049). The distribution of scores was heavily skewed towards the positive end of the scale, leading to limited power to discriminate among parents of children with mild asthma. The instrument had good internal consistency and was well accepted by the parents.