Developing a quality of life outcome measure for paediatric severe asthma: a field-testing survey

Existing Quality of Life (QoL) tools fail to capture the unique deficits experienced by Children and Young People (CYP) with severe asthma. This study aimed to field-test a prototype Paediatric Severe Asthma Questionnaire (PSAQ) for clinical and research settings. We conducted a cross-sectional survey among CYP with severe asthma aged 10-17 years and parents of children aged 6-17 years. Participants indicated which PSAQ items were bothersome in daily life, and rated level of bother on a 5-point scale. An impact method analysis yielded an importance score (0-5), with a score of ≥3 indicating the item is relevant and should be retained in the questionnaire. 40 responses were collected, including 26 CYP (mean age=13.2 years, 47.5% female) and 14 parents (mean age=37 years, female 85.7%). The majority of participants were from the UK (70.0%), followed by US (12.5%), Australia (12.5%), and Spain (2.5%). 9 of 15 PSAQ items received an importance score of ≥3; the highest scores were assigned to 'Worry asthma may not get better' (3.70), ‘Problems with sleep because of asthma’ (3.48), and ‘My activities for fun’ (3.45). Conversely, 'feeling annoyed' and 'feeling worried about things other than asthma' received the lowest scores (2.70 and 2.43 respectively), indicating these are least bothersome. Notably, only four items received an importance score of ≥3 from both CYP and parents, highlighting heterogeneity in perspectives. We have field-tested the prototype PSAQ to assess QoL in paediatric severe asthma. Next steps involve validating the PSAQ to ensure it is fit for purpose. Ultimately, the PSAQ will be a valuable tool for patient-monitoring and evaluating treatment response in clinical trials.