Quality of life for asthma patients : an existential-aesthetic theory
Aim: It was the aim of the present study to investigate in detail and at length the experience of quality in a life with asthma, within the perspective of those suffering from the disease rather than those with a professional interest in it. Method: An ethnographic method was adopted, consisting of three semi-structured interviews with a sample of 22 moderately severe asthma patients referred to consultant respiratory physicians in Aberdeen, Scotland. Potential interviewees, stratified by age, sex and social class, were invited to participate after they had completed their year in the Grampian Asthma Study of Integrated Care (GRAS SIC 1994a). After a minimum delay of eight months following their exit from GRAS SIC, interviews were conducted in their homes, were audio recorded, selectively transcribed, and subjected to content analysis. Conclusions and implications: Identifying quality of life with asthma as an existential concept aesthetically understood and therefore unpredictably variable has serious implications for its use in clinical practice, health care planning and purchasing, and research. Professional judgements about the outcome of treatment for individual asthma patients should incorporate that patient's valuation of that outcome: what may to the professional be highly desirable treatment effects may be irrelevant to the person within whom they are observed. Similarly, planning and purchasing health care for asthma on the basis of data which do not incorporate the value judgements of the users of services may lead to the provision of insignificant levels and types of care for specific communities and a failure to provide care or services for which the community has a true value. Each of these effects derives from the difficulty of validly measuring so unstable an outcome. Research into quality of life should concentrate upon the task of devising outcome measurement methods which directly, accurately and meaningfully incorporate patient-held values. The difficulty of doing so should not be underestimated. A clear distinction should be drawn between methods which measure an aspect (or aspects) of health status and those which reflect quality of life. These two concepts are not identical, and care should be taken that the terms are used independently, specifically and without ambiguity. Health status describes the physical, mental or social functioning of the individual within their condition or state. To use health status measures to validate assessment of life quality is to misconceive the nature of their relationship. Quality of life refers to the all-embracing subjective value of the human condition.