Interpreting quality of life data: should we listen to the patient or the clinician?

Abstract

The article by Wyrwich et al 1 raises 2 interesting issues. The first concerns the disparity between clinicians’ and patients’ perceptions of the change in patients’ functional abilities (physical, social, occupational, and emotional) that should be considered important. The second concerns the relationship between clinical asthma and health-related quality of life (HRQoL) and how clinicians make use of this information for clinical decision-making. The participants in clinical decision-making have changed enormously over the last decade. Rapidly departing are the days when the clinician alone evaluated the patient, determined the patient’s needs, and prescribed the treatment. Today, patients are much more closely involved in understanding their condition, identifying their own needs, and working with the clinician in developing a treatment plan. Although the majority of asthma drugs are given on prescription, most patients are encouraged to understand their condition and to manage it, even during exacerbations, without having to resort to calling their clinician all the time. During this transition to greater shared decision-making, 2 there has been an increasing awareness of the importance of identifying patients’ needs and addressing both clinical and patients’ goals during the treatment decision. As a result, HRQoL questionnaires are now being used routinely in clinical practice. Wyrwich et al 1 have asked whether clinicians’ perceptions of a clinically important change in patients’ asthma-specific quality of life are different from those that patients themselves consider important. The authors selected 4 patients who had participated in clinical trials. They extracted all the conventional asthma clinical outcomes, presumably airway caliber, symptoms, and rescue 2-agonist use, plus the patients’ responses to the generic health profile, the Medical Outcomes Survey Short Form 36 (SF-36), and the diseasespecific Asthma Quality of Life Questionnaire (AQLQ). Two sets of data were extracted for each patient. Six clinicians were then asked to review these data and to say whether the “clinical aspect of a patient’s change was important in the treatment of the individual patient” and what change in score on the AQLQ should be considered important. The clinicians concluded that patients should experience a change in AQLQ score of 1.0 or greater (on the 7-point scale) for it to be of importance. This is twice as high as the 0.5 change that patients themselves consider important. 3 This observation raises a fundamental question: whose perception of change in a patient’s quality of life is more relevant, the clinician’s or the patient’s? With patients now playing a much larger role in their own health management, maybe it is time to accord them the right to decide whether a treatment has helped them to function better in their everyday lives. Most asthma assessments include both clinical status (asthma control) and HRQoL because correlations between the 2 are only weak to moderate, and patient experiences cannot be imputed from the clinical variables. 4 Although it is now recommended in clinical trials that the various components of asthma should be examined individually, clinicians need to make individual patient decisions based on an aggregation of all this information. International guidelines indicate that the primary goal of asthma treatment is to improve control (minimization of symptoms, rescue 2-agonist use, airway narrowing, and activity limitations) and thus reduce the risk of exacerbations. 5 With this emphasis on asthma control, the clinicians in this study may have been influenced by the changes in clinical indices when they identified that only changes in AQLQ scores greater than 1.0 should be considered clinically important. We now have evidence that patients can experience important improvements in the asthma quality of life without any change in the clinical indices. 6 If the 4 patients in this study had small changes in their clinical outcomes, this may have lead the clinicians to overestimate the change in quality of life that should be considered important. Therefore, it may be unwise for clinicians to temper their interpretation of HRQoL data in light of the clinical data.