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We have to talk about health-related quality of life
  1. Rob J Forsyth
  1. Correspondence to Dr Rob J Forsyth, Institute of Neuroscience, Newcastle University, Newcastle upon Tyne NE1 7RU, UK; rob.forsyth{at}newcastle.ac.uk

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‘Happiness does not depend on outward things, but on the way we see them.’ Leo Tolstoy, Childhood, Boyhood and Youth.

Can we ever know the mind of another? A few years ago, the Study of Participation of Children with Cerebral Palsy Living in Europe (SPARCLE) researchers published a seminal paper1 on the ‘quality of life’ of young people with cerebral palsy (the reason for the quotation marks will become clear). The unarguable message of this work was that—so long as they were free from pain—these young peoples’ self-assessments of their emotional well-being matched those of the general population, despite sometimes very severe objective impairments. In another object lesson in this paradox, the introduction over the last couple of decades of non-invasive ventilation for boys with Duchenne muscular dystrophy—which had been a highly controversial proposal seen as ‘prolonging wretched lives’—was supported by a wealth of evidence in the boys’ own voices that they valued their existence and situation.2 Life expectancies have almost doubled since as a result of the widespread acceptance of this intervention.

These are important lessons in the value of hearing the patient’s voice. Objective (externally observable) assessments of a person’s health can differ widely from subjective valuations of the same health state, and these different viewpoints can lead to very different priorities both in intervention development (what about my situation do I most want changed?) and measurement (what aspects of my situation should a meaningful health status measure reflect?). The patient-reported outcome revolution in healthcare research is long overdue.

Ghotra et al3 report on ‘health-related quality of life’ (HRQOL) in children after paediatric arterial ischaemic stroke and show that it is lower than in healthy controls. The unthinking reader …

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