Developing a quality of life outcome measure for paediatric severe asthma: a qualitative study

Rattu, Anna, Easton, Stephanie and Roberts, Graham (2023) Developing a quality of life outcome measure for paediatric severe asthma: a qualitative study. Thorax, [S44]. (doi:10.1136/thorax-2023-BTSabstracts.50).

Abstract

Introduction: we previously conducted a systematic review of outcome measures for severe asthma and found that existing quality of life (QoL) tools fail to fully capture the deficits experienced by paediatric patients. While the Severe Asthma Questionnaire (SAQ) has been developed for adults, its suitability for children and adolescents remained unexplored. Our aim was to assess the appropriateness of the SAQ for paediatric use and develop a prototype Paediatric SAQ (PSAQ).

Methods: we conducted qualitative interviews with children, adolescents, parents, and Healthcare Professionals (HCPs) caring for severe asthma patients. Participants’ perspectives on the relevance, comprehensibility, and comprehensiveness of the SAQ for the paediatric population were sought. The interviews were analysed thematically, and the findings informed development of a prototype PSAQ.

Results: a total of 26 patients and parents of children with severe asthma aged 7–17 years were interviewed. The majority were female and had experience with biologics. The 20 HCPs interviewed had ≥10 years’ experience practicing at a severe asthma centre. Participants represented 11 countries. The majority of SAQ items were deemed relevant with suggestions to remove adult-related examples and edits to improve comprehensibility. For instance, a parent commented their adolescent ‘may not be able to do housework if she’s feeling that she’s not having a good day’, and the adolescent echoed that if they ‘had a big flare-up of my asthma, I’m not going to be cleaning’, and suggested using the term ‘chores’. However, examples such as ‘home maintenance’ and ‘gardening’ were considered irrelevant, a sentiment shared by HCPs who noted the limited familiarity of patients with such adult-related activities. Participants recommended enhancing the PSAQ’s comprehensiveness by addressing environmental triggers, pets, and treatment burden. Several patients mentioned they ‘want a pet but can’t because of my asthma’ while others expressed ‘I think it’s been one of the issues throughout my life with asthma um making sure to take the medication’.

Conclusions: we have developed the prototype PSAQ for assessing QoL impairments specific to paediatric severe asthma. Further research will validate the PSAQ, which will be valuable for patient monitoring in clinic and evaluating treatment effectiveness in clinical trials.

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Contributors

Author: Anna Rattu

Author: Graham Roberts

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