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© Cambridge University Press 2011. Introduction Measuring patients' self-reported health status has become an established and credible way of assessing the effectiveness of medical interventions and health services; however, this was not always the case. Historically, medicine relied on clinical, radiologic, and laboratory tests and doctors' interpretations to assess treatment outcomes, and information from patients was not systematically collected and analyzed. The initial, slow uptake in measuring patient-reported outcomes (PROMs) was due in part to the view of some medical researchers and clinicians that measuring patient experience was either very difficult or impossible to do, and that such an undertaking could never be totally scientific. Consequently, traditional medical assessments gained themselves something of a reputation of being objective, “hard data,” whereas patient-based material was considered subjective, “soft data” – the latter, rather pejorative term implying that the data were, one assumes, either redundant or simply inaccurate. In fact, objectivity is determined by the construct being assessed, and not by how it is measured. Therefore, patient-reported outcomes that assess observable constructs such as mobility are actually objective measures; in contrast, feelings, well-being, and satisfaction are more subjective measures. Needless to say, anyone who has ever tried to develop a questionnaire will have found the process less straightforward than he or she anticipated. Furthermore, those of you who have attempted to complete questionnaires that do not make sense or that are repetitive or irrelevant will be aware that the superficially simple task of asking questions is an activity that often is done very badly.

Original publication





Book title

Quality of Life Measurement in Neurodegenerative and Related Conditions

Publication Date



1 - 9