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