Jan 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

To measure wellbeing, classical econometric or clinimetric endpoints are increasingly considered overly reductionistic. The novel area of Quality of Life Research aims to provide more comprehensive and humanistic measures of wellbeing or happiness. For example, in evidence-based health-care research, it has become a health-economical ethical imperative to try and express the primary endpoints in e.g. Quality Adjusted Life Years (QALYs) or Happy Life Years (HALYs). The classical endpoints of only health-related functions cannot provide the 'quality' term in QALYs or HALYs. The major problem in felicitometrics is the measurement of the Q or H in QALYs or HALYs.
…How do we measure wellbeing? The field of felicitometrics is rife with dilemmas on many levels. Philosophically, is wellbeing only subjective or also objective: do we want to measure hedonistic utilitarian or eudaimonic normative constructs of happiness (Bok 2010)? Are “objective” goods such as safety, freedom, justice, knowledge, love and capabilities for self-accomplishment defining values (Nussbaum & Sen 1993), or is the value of these goods in felicitometrics only as conditions for QOL (because they promote subjective, experiential QOL)? Another dispute is psychometric: what are the respective virtues of experience sampling (e.g. Kahneman & Deaton 2010), single-question uniscales of global QOL (Veenhoven 2011) and multi-item, multidimensional scales and composed indices?
Experience sampling is decidedly hedonistic: it records ‘mood of the moment’, the balance of positive and negative affects at random moments. But just like a chair is something else than a bunch of pieces of wood and an article is more than a collection of words, there clearly is an emergent dimension to life beyond the integral of all its moments, if only because experiences interact and blend into an emergent ‘total experience’.
As for multidimensional instruments to measure QOL (‘profile’ instruments), it is uncontroversial that the physical, mental and social domains, each containing many dimensions and items, all play a role in overall QOL. What is controversial, is the selection of the items and the weight of the different dimensions in overall QOL. QOL dimensions have been shown to have very different importances e.g. between different patient populations or (sub)cultures, and giving the selected items equal or arbitrary weights creates biases (Rose et al. 1999, Rojas 2006). Moreover, in human individuals, assuredly complex systems, the many dimensions and items of QOL observably interact, probably sometimes also in chaotic or unpredictable ways. For example, one’s health state may affect one’s appraisal of one’s finances and a person in love may lose interest in social relations. In conditions of complexity, the weights of isolated items in individuals become for all practical 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, suppose in randomised populations of patients with end-stage metastatic cancer, one would compare last-line chemotherapy (which provides some hope but only a small chance of remission, and has nasty side effects) with only palliative care, and one would, as can be expected, find no significant differences in average survival (the few remissions on chemotherapy being balanced by earlier deaths), and chemotherapy superior for the mental domain, but inferior for the physical comfort domain: we would not know which treatment, on aggregate, would be the better.
The problem is that QOL is an individual and emergent construct, the end result of a great many interactions between components, some of which are not practically measurable. Overall QOL is therefore of a different order than its contributing components. It can best be captured as a global self-assessment. Just as people in everyday life, while acting under uncertainty, make global assessments all the time, so they can seriously answer the serious question: 'How have you been?' (Veenhoven 2011).
A vast body of useful data has been generated with the conventional global uniscale question (Veenhoven 2011). E.g. it allowed by comparing QOL in a great many countries to validate the Universal Declaration of Human Rights (Heylighen & Bernheim (2000). Unfortunately, some perplexing results, such as Nigerians coming out the happiest people in the world (Inglehart 2004), undermine its reliability. Indeed, the global uniscale question on QOL has its own problems. One is banalisation or mood-of-the day bias: it is a more serious question than the everyday ‘How are you?’. A second problem is peer-relativity: respondents comparing themselves to others rather than using their own criteria. Yet another is cultural relativity: Chinese, for example, tend to rather uniformly report intermediate levels of QOL, probably in conformity with Confucian virtues of moderation (Ouweneel & Veenhoven 1991, Diener 2000, Lau & Cummins 2004).
An attempt to remediate some problems with the conventional question on global wellbeing is Anamnestic Comparative Self Assessment (ACSA). It aims to be a solemn, practical, non peer-relativistic, non-cultural, experiential, self-anchored and well tolerated way to obtain global QOL responses. The respondents are invited to define their individual scale of QOL using their memories of the best and the worst times in their life experience as the scale anchors. ACSA is thus both exquisitely idiosyncratic, and yet can in a universalist humanistic perspective be considered generic if one –reasonably- assumes that all individuals have had excellent and terrible times (Shmotkin et al. 2006).
Originally, ACSA was developed in a clinical setting where cancer patients, faced with their life-threatening illness, volunteered that they spontaneously recalled the best and the worst periods in their lives, i.e. had gone through a life-review process. In effect, they had thus defined a highly personal scale of global subjective wellbeing. In ACSA interviews (or in paper or electronic formats) respondents are asked to rate the quality of their life during a preceding period of e.g. two weeks in comparison with their personal best (+5 on the rating scale) and worst (-5 on the scale) periods in life (Bernheim 1983). In e.g. the patient-physician relation ACSA promotes empathetic communication (Singer & Bluck 2003). ACSA ratings were shown very sensitive to inter- respondent differences (Bernheim 1983; Bernheim and Buyse 1984, Bernheim et al. 2006, Möller et al 2008, Bruno et al. 2011). When ACSA was used in consecutive consultations, ACSA ratings were found to be quite sensitive to changes in disease state, with major fluctuations over the evolution of disease (Bernheim 1983; Bernheim and Buyse 1984).
In research conducted in several European sites the best periods of life typically concerned experiences of love, the birth of a child, career milestones or other personal achievements. The worst periods in life were typically bereavements, divorce, abuse, imprisonment, bankruptcy, experiences of war or a serious disease. In partial contrast, in a South-African formerly disadvantaged population, the anchors were much more often related to income (Möller et al. 2008). This finding is in agreement with a Maslowian view of human needs (Maslow 1970). Research in clinical settings found that ACSA differentiated better than the conventional question on global subjective well-being, was more responsive to objective changes in the lives of respondents, and less sensitive to trait-like variables. ACSA was found particularly suited for use in longitudinal or intervention studies, as it appeared to be more responsive than the conventional single-question on global QOL (Bernheim et al. 2006).
In sum, the main distinguishing features of the ACSA measure are as follows. The frame of reference against which subjective well-being is assessed, by being biographical, is made concrete, explicit and personal. This discourages peer- or culture-relative and superficial or socially desirable responses. ACSA is less sensitive to trait-like socio-demographic variables and therefore probably to personality traits and cultural differences (Bernheim et al. 2006). Philosophically, its invitation to life review at least gives the respondents the option to choose a eudaimonic perspective on their QOL or to use their own blend of hedonistic and eudaimonic perspectives.
Therefore, ACSA is proposed as a refinement of the well-established conventional single-question on global QOL. It is an alternative to composite indices and a complement rather than an alternative to multi-dimensional questionnaires. Using ACSA together with such QOL profile instruments allows to by logistic regression better determine the respective contributions of dimensions and items to overall QOL in populations and thus to identify those whose improvement have the greatest probability to enhance the QOL of the greatest number.


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