How to get serious answers to the serious question: 'How have you been?': Subjective quality of life (QOL) as an individual experiential emergent construct

Authors
Citation
Jl. Bernheim, How to get serious answers to the serious question: 'How have you been?': Subjective quality of life (QOL) as an individual experiential emergent construct, BIOETHICS, 13(3-4), 1999, pp. 272-287
Citations number
31
Categorie Soggetti
Public Health & Health Care Science
Journal title
BIOETHICS
ISSN journal
02699702 → ACNP
Volume
13
Issue
3-4
Year of publication
1999
Pages
272 - 287
Database
ISI
SICI code
0269-9702(199907)13:3-4<272:HTGSAT>2.0.ZU;2-D
Abstract
Medical, scientific and societal progress has been such that, in a universa list humanist perspective such as the WHO's, it has become an ethical imper ative for the primary endpoints in evidence based health care research to b e expressed in e.g. Quality Adjusted Life Years (QALYs). The classical endp oints of discrete health-related functions and duration of survival are inc reasingly perceived as unacceptably reductionistic. The major problem in 'f elicitometrics' is the measurement of the 'quality' term in QALYs. That the mental, physical and social domains, each containing many dimensio ns and items, all contribute to QOL is uncontroversial. What is controversi al, is the weight of he different dimensions in overall QOL. It has been sh own to he very different between different patient populations. In human in dividuals, assuredly complex systems, the many dimensions and items of QOL observably interact, probably sometimes also in chaotic ways. In these cond itions, the weights of isolated items in individuals become for all practic al purposes meaningless. Therefore, the much used multi-item questionnaires at best describe, but do not evaluate QOL, neither in individuals, nor in populations. For example, allergic patients treated with cetirizine scored better than t hose a placebo on all dimensions of the SF-36, a standard QOL questionnaire . Here there is no serious doubt that the treatment improved QOL, because i t is highly unlikely that any important dimension on which the patient grou ps would have scored otherwise is missing in the SF-36. However, whether pi racetam treatment of acute stroke, which improved the surrogate endpoints n eurological and functional scores, also improved QOL is plausible but will be proven only when comprehensive QOL measurement will have been done. And suppose in randomised populations of end-stage metastatic solid cancer pati ents, one would compare palliative last-line chemotherapy with only palliat ive cart, and one would, as can be expected, find no significant difference s in average survival, and chemotherapy superior for the mental domain, but inferior for the physical comfort domain: we would not know which treatmen t, on aggregate, would be the better The problem is that QOL is an individual and emergent construct, the result ant of a great many intractions, and of a different order than its contribu ting components. Overall QOL can therefore best be captured only as the Ges talt of a global self-assessment. Just as people in everyday life, while ac ting under uncertainty, make global assessments all the time, so they can s eriously answer the serious question: 'How have you been?' A solemn, practi cal, non peer-relativistic, non-cultural, experiential, and well tolerated way to obtain such responses is Anamnestic Comparative Self Assessment (ACS A), in which the subjects' memories of the best and the worst times in thei r life experience define their individual scale of QOL. ACSA is thus both e xquisitely idiosyncratic, and yet can in a universalist humanistic perspect ive be considered generic. Using both a multi-item questionnaire and a glob al assessment allows by one logistic regression, to estimate the weights of the dimensions and items in populations, and thus identify, those whose im provement would most contribute to the QOL of the greatest number. A combin ed approach to measurement of QOL is necessary to maximise the utility of Q OL interventions.