Beyond the ‘how are you, dear’

We all want the patient to tell us how they feel, but assessing quality of life has gone way beyond this. Quality of life questionnaires are increasingly important clinical trial end-points, and, in cystic fibrosis in particular, where FEV₁ is often too stable to be useful to be used as a clinical trial end-point, the use of questionnaires is assuming increasing prominence. In this issue, Abbott et al report longitudinal data on Health-related quality of life (HRQoL) in cystic fibrosis over a 12 year period and correlated this with clinical outcomes. Surprisingly, both FEV₁ and HRQoL declined slowly, something that was not predicted by cross-sectional studies. Optimism was a good thing (despite the gloomy Nero Wolfe dictat ‘The Pessimist only gets pleasant surprises, the Optimist only unpleasant’). Of great importance was that some (presumably optimistic) reported no change in HRQoL while their lung function declined. For us, this manuscript emphasises the importance of really long-term longitudinal …