Literature DB >> 11657238

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

Jan L Bernheim.   

Abstract

Medical, scientific and societal progress has been such that, in a universalist humanist perspective such as the WHO's, it has become an ethical imperative for the primary endpoints in evidence based health care research to be expressed in e.g. Quality Adjusted Life Years (QALYs). The classical endpoints of discrete health-related functions and duration of survival are increasingly perceived as unacceptably reductionistic. The major problem in 'felicitometrics' is the measurement of the 'quality' term in QALYs. That the mental, physical and social domains, each containing many dimensions and items, all contribute to QOL is uncontroversial. What is controversial, is the weight of the different dimensions in overall QOL. It has been shown to be very different between different patient populations. In human individuals, assuredly complex systems, the many dimensions and items of QOL observably interact, probably sometimes in chaotic ways. In these conditions, 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, allergic patients treated with cetirizine scored better than those on placebo on all dimensions of the SF-36, a standard QOL questionnaire. Here there is no serious doubt that the treatment improved QOL, because it is highly unlikely that any important dimension on which the patient groups would have scored otherwise is missing in the SF-36. However, whether piracetam treatment of acute stroke, which improved the surrogate endpoints neurological 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 patients, one would compare palliative last-line chemotherapy with only palliative care, and one would, as can be expected, find no significant differences in average survival, 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 resultant of a great many interactions, and of a different order than its contributing components. Overall QOL can therefore best be captured only as the Gestalt of 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?' A solemn, practical, non peer-relativistic, non-cultural, experiential, and well tolerated way to obtain such responses is Anamnestic Comparative Self Assessment (ACSA), in which the subjects' memories of the best and the worst times in their life experience define their individual scale of QOL. ACSA is thus both exquisitely idiosyncratic, and yet can in a universalist humanistic perspective be considered generic. Using both a multi-item questionnaire and a global assessment allows by one logistic regression, to estimate the weights of the dimensions and items in populations, and thus identify those whose improvement would most contribute to the QOL of the greatest number. A combined approach to measurement of QOL is necessary to maximise the utility of QOL interventions.

Entities:  

Keywords:  Biomedical and Behavioral Research; Health Care and Public Health

Mesh:

Substances:

Year:  1999        PMID: 11657238     DOI: 10.1111/1467-8519.00156

Source DB:  PubMed          Journal:  Bioethics        ISSN: 0269-9702            Impact factor:   1.898


  24 in total

Review 1.  Are quality of life measures patient centred?

Authors:  A J Carr; I J Higginson
Journal:  BMJ       Date:  2001-06-02

2.  Felicitometric hermeneutics: interpreting quality of life measurements.

Authors:  Charles J Kowalski; Jan L Bernheim; Nancy Adair Birk; Peter Theuns
Journal:  Theor Med Bioeth       Date:  2012-06

Review 3.  Quality of life in sarcopenia and frailty.

Authors:  René Rizzoli; Jean-Yves Reginster; Jean-François Arnal; Ivan Bautmans; Charlotte Beaudart; Heike Bischoff-Ferrari; Emmanuel Biver; Steven Boonen; Maria-Luisa Brandi; Arkadi Chines; Cyrus Cooper; Sol Epstein; Roger A Fielding; Bret Goodpaster; John A Kanis; Jean-Marc Kaufman; Andrea Laslop; Vincenzo Malafarina; Leocadio Rodriguez Mañas; Bruce H Mitlak; Richard O Oreffo; Jean Petermans; Kieran Reid; Yves Rolland; Avan Aihie Sayer; Yannis Tsouderos; Marjolein Visser; Olivier Bruyère
Journal:  Calcif Tissue Int       Date:  2013-07-05       Impact factor: 4.333

4.  Long-term functioning following whiplash injury: the role of social support and personality traits.

Authors:  Jo Nijs; Els Inghelbrecht; Liesbeth Daenen; Said Hachimi-Idrissi; Luc Hens; Bert Willems; Nathalie Roussel; Patrick Cras; Jan Bernheim
Journal:  Clin Rheumatol       Date:  2011-02-16       Impact factor: 2.980

Review 5.  A review of life quality in living donors after liver transplantation.

Authors:  Dong-Wei Xu; Xi-Dai Long; Qiang Xia
Journal:  Int J Clin Exp Med       Date:  2015-01-15

6.  The suitability of the WHOQOL-BREF for Canadian and Norwegian older adults.

Authors:  Mary H Kalfoss; Gail Low; Anita E Molzahn
Journal:  Eur J Ageing       Date:  2008-02-13

7.  Live and let die: existential decision processes in a fatal disease.

Authors:  Dorothée Lulé; Sonja Nonnenmacher; Sonja Sorg; Johanna Heimrath; Martin Hautzinger; Thomas Meyer; Andrea Kübler; Niels Birbaumer; Albert C Ludolph
Journal:  J Neurol       Date:  2014-01-12       Impact factor: 4.849

8.  Recruitment bias in chronic pain research: whiplash as a model.

Authors:  Jo Nijs; Els Inghelbrecht; Liesbeth Daenen; Said Hachimi-Idrissi; Luc Hens; Bert Willems; Nathalie Roussel; Patrick Cras; Kristien Wouters; Jan Bernheim
Journal:  Clin Rheumatol       Date:  2011-08-19       Impact factor: 2.980

9.  Therapeutic decisions in ALS patients: cross-cultural differences and clinical implications.

Authors:  Peter M Andersen; Magdalena Kuzma-Kozakiewicz; Jürgen Keller; Helena E A Aho-Oezhan; Katarzyna Ciecwierska; Natalia Szejko; Cynthia Vázquez; Sarah Böhm; Gisela Badura-Lotter; Thomas Meyer; Susanne Petri; Katharina Linse; Andreas Hermann; Olof Semb; Erica Stenberg; Simona Nackberg; Johannes Dorst; Ingo Uttner; Ann-Cristin Häggström; Albert C Ludolph; Dorothée Lulé
Journal:  J Neurol       Date:  2018-05-04       Impact factor: 4.849

Review 10.  Evaluation of quality of life in individuals with severe chronic motor disability: A major challenge.

Authors:  Marie-Christine Rousseau; Karine Baumstarck; Thierry Billette de Villemeur; Pascal Auquier
Journal:  Intractable Rare Dis Res       Date:  2016-05
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