Background: In order for systematic reviews to inform clinical decisions, it is vital that the included studies measure important, appropriate outcomes. Most clinical trials in childhood asthma measure outcomes reflecting short-term disease activity, but not functional status, quality of life (QoL), or long-term effects of treatments (1). Objectives: To identify which outcomes are most important to parents of young people with asthma, young people themselves, and clinicians. Methods: Clinicians completed a two-round Delphi survey. Parents, recruited in asthma clinics, participated in both rounds. Young people, aged at least 13 years, participated in the first round. In Round 1, clinicians were asked to suggest outcomes they felt were important in clinical practice. Parents and young people were asked, using open questions, how they judged whether they were satisfied with anti-asthma medication. Responses were classified into appropriate corresponding outcomes by two researchers independently. In Round 2, participants were shown outcomes suggested by at least 10% of responders in Round 1. They scored the importance of each from 0–4, and selected the three most important. Results: Forty-six clinicians completed Round 1, and 43 of these completed Round 2. Thirty-eight parents and 11 young people completed Round 1, and 50 parents completed Round 2. Of 18 outcomes listed in Round 2, those ranked as most important related not just to short-term disease activity, but also QoL, functional status and long-term treatment effects. Conclusions: In childhood asthma, certain outcomes are infrequently measured in clinical trials but are highly important to clinicians and parents. This limits the usefulness of such trials. When identifying outcomes of most importance for a Summary of Findings table, systematic reviewers should be aware of such discrepancies.
Reference 1. Sinha et al (2009) Outcomes in Clinical Trials of Inhaled Corticosteroids for Children with Asthma Are Narrowly Focussed on Short Term Disease Activity PLoSONE 4(7):e6276.