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

Abstract

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.

Validation of the Spanish version of the Pediatric Asthma Caregiver Quality of Life Questionnaire (PACQLQ) in a population of Hispanic children

“…In the same manner, as reported by Juniper et al in the study in which they developed and evaluated the measurement properties of the PACQLQ, our findings provides additional support for adequate test–retest reliability and sensitivity to change of the questionnaire. Consistent with findings by Reichenberg et al [27], we found that the Spanish version of the PACQLQ had good internal consistency and excellent usability, with a very good acceptance by the parents/caregivers of the asthmatic children included in the study. Some previous studies have compared pulmonary function tests measures with PACQLQ scores, although not all with the objective of evaluating the measurements properties of the questionnaire.…”

“…Some previous studies have compared pulmonary function tests measures with PACQLQ scores, although not all with the objective of evaluating the measurements properties of the questionnaire. While some studies have correlated PACQLQ scores with forced expiratory volume in one second (FEV1) and peak expiratory flow rate (PEFR) measures [11,12], others have correlated PACQLQ scores only with PEFR measures [27] and others have correlated PACQLQ scores only with FEV1 measures [28]. With a few exceptions, these studies have shown no significant correlations between PACQLQ scores and changes in FEV1 or PEFR measurements.…”

Cognitive Behavioural Therapy and Mindfulness for Health-Related Quality of Life: Comparing Treatments for Parents of Children with Chronic Conditions - A Pilot Feasibility Study

“…In addition, being a parent of a child with a chronic condition can negatively affect Health-Related Quality of Life (HRQOL), and each disease presents unique challenges [ 10 ]. For example, parents of asthmatic children have poor HRQOL - especially in the emotional domain, affecting their social life [ 11 ]. Further, mothers, but not fathers, of children with autism spectrum disorders have reported impaired HRQOL, and there is a relationship between maternal well-being and child behaviour characteristics [ 12 ].…”