Individual Quality of Life

Joyce, C R B Joyce, Hannah McGee, Ciaran O'Boyle

• Publisher: Psychology Press
• Year: 2013
• Print ISBN: 9789057024245
• eBook ISBN: 9781135852238
• Topic: Psychology
• Subtopic: History & Theory in Psychology
• Index: Psychology

The rubric "Quality of Life" first came to the explicit attention of the medical profession a little over thirty years ago. Despite the undoubted fact that each one of us has his or her own Quality of Life, be it good or bad, there is still no general agreement about its definition, or the manner in which it should be evaluated. Although much has been written about quality of life, this work has been largely concerned with population-based studies, especially in health policy and health economics. The importance of "individual" quality of life has been neglected, in part because of a failure to define quality of life itself with sufficient care, in part perhaps because of a belief that it is impossible to develop a meaningful method of measuring individual variables.
The editors of this book believe that the primary focus of quality of life is and must continue to be the individual, who alone can define it and assess its changing personal significance. The challenge of presenting this belief

I
CONCEPTUAL AND
METHODOLOGICAL PRINCIPLES

1. INTRODUCTION: THE INDIVIDUAL PERSPECTIVE

C. R. B. JOYCE, CIARAN A. O’BOYLE AND HANNAH M. MCGEE

About ten years ago, one of the editors persuaded the multinational pharmaceutical company for which he was then working that the intention of its medical department to explore the value of quality of life (a so-called study of which had just been published by a competitor) (Croog et al., 1986) for its own clinical trials of new drugs would be better served by seeking new methods that focused on the individual, rather than the “epidemiological” methods then in vogue (Joyce et al., 1987). The original proposal of February 1987 noted that:

“Until now, most attempts to study patients’ quality of life have relied upon one or another form of questionnaire that describes the individual’s state as seen from the outside; that is, in terms of signs and symptoms. The purposes of the present programme… are (a) to use methods derived from experimental and clinical psychology for the description by the patient of his/her own perception of health status and its personal meaning; (b) to determine which methods correspond best to quality of life statements with medical and personal value; (c) to examine the extent to which they capture information similar to/different from that found with current methods (convergent/divergent validity); (d) to explore the sensitivity of these measures to therapeutic interventions at both individual and group levels (discriminant validity).”

The other editors were becoming interested in similar problems at the same time, and a fortunate chain of circumstances brought all three into contact. The consequent fruitful collaboration continues. CIBA-Geigy, the company in question, provided generous financial support for a period of five years, and of the three techniques from experimental social psychology originally chosen for exploration (Judgment Analysis (JA), the Repertory Grid (RG) and Verbal Content Analysis), the first two have led to the JARGONS project (Judgment Analysis and Repertory Grid On New Systems) and many subsequent applications to the real-life study of individual quality of life. Meanwhile, other investigators have been developing other new approaches. There is now enough contrasting and complementary work to make it worthwhile to bring reviews and examples together under one cover, so that those who are interested can more easily compare the advantages and disadvantages, as well as the depth to which each method succeeds in penetrating the cloud of unknowing.

To change the metaphor, the black box of the individual person, which is both the student and studied of all psychological enquiry, though reluctantly yielding at last to the combined multidisciplinary attack of cognitive scientists, continues to present formidable methodological difficulties: of definition, of measurement, of stability and analysis, to name a few. Among the many examples of such methodological problems are those of psychological research to which Paul Meehl drew attention in 1973 (Meehl, 1973); Guy Claxton’s demand for “a generic psychology… which is of practical use to ordinary folk in reflecting upon and ordering their daily lives” (Claxton, 1991) and the sober registration by a Lancet editorialist that the identical body of data yields very different conclusions if analysed with differing definitions of the target indication, changed analytical models or even a simple change in grouping by age (Lancet, 1991). While the deficiencies in such research at all levels are being pointed out and worried over it may seem paradoxical to some that the editors have concluded that much is nevertheless to be gained by returning as far as possible to the source of all difficulty: the individual himself.¹ La Bruyère pointed out 300 years ago, “Tout notre mal vient de ne pouvoir être seuls: de là le jeu, le luxe, la dissipation, le vin, les femmes, l’ignorance, la médisance, l’envie, l’oubli de soi-même et de Dieu.” (“All our troubles come from inability to be alone: gambling, luxury, dissipation, drink, women, ignorance, lying, jealousy, neglect of oneself and neglect of God”: la Bruyere, 1688–1694). This imposing list of behaviours seen as evil or at least undesirable would not be so regarded in its entirety today, a point that emphasises yet another strength of methods of intensively investigating the individual: that they do not restrict themselves, as do so many conventional methods, to negatives — limitations of movement, intellectual incapacities and moral uncertainties.

In introducing a book intended to present a comprehensive survey of its chosen field, it is necessary to apologise in advance for possible omissions. If these have occurred, they are certainly unintentional. As the title shows, methods that take the individual, rather than the group, as the unit of study, are our concern. Clearly there is no hard and fast dividing point; rather, any method (and there are by now several hundred) that investigates the area can be placed somewhere on a continuum that runs from Health Economics to Psychoanalysis. Our interest is in those methods which encourage each individual to represent his quality of life in his own terms, rather than being obliged to reply to some formal kind of questioning that has been based upon the decisions of others, no matter how expert, even if they have themselves been patients suffering from the same condition. Thus, some well-established instruments, such as the Sickness Impact Profile (Bergner et al., 1981) the Nottingham Health Profile (Hunt et al., 1991) or the Medical Outcomes Scale (Ware et al., 1992) are not included here, in spite of the undoubted contributions that they have made to knowledge about health status in a wide variety of subject populations, healthy as well as sick. However, although our own interest began with the development of methods that could be used in clinical trials, and has therefore been greatly influenced by the problems associated with the study of phenomena that change with time, the majority of instruments that have been published so far have not had this restriction as a first concern. Moreover, although these and our own methods are mainly concerned with medical applications, there are good reasons for thinking that more attention should be paid than at present to the quality of life of “healthy” people, especially in developing countries or in the often no less disadvantaged communities to be found in so-called developed countries.

The desire that some of the work described here may find application in such circumstances as well as in the medical environment in which it usually had its origin decrees that we describe a further criterion for the present selection. In general, investigators have distinguished between “specific” and “general” methods. Specific measures such as the Rating Form of IBD Patient Concerns (Drossman et al., 1989) or the Arthritis Impact Measurement Scale (Meenan et al., 1992) were developed to provide information about a particular condition, inflammatory bowel disease and arthritis respectively. General measures such as the Sickness Impact Profile (Bergner et al., 1981), the Nottingham Health Questionnaire (Hunt et al., 1991) and the MOS-36 (Ware et al., 1992) are considered either to be applicable in a wide variety of indications or to tap into the more fundamental aspects of quality of life that are in some sense more fundamental. We believe that all methods of investigating true individual quality of life (IQOL) are general, and that there is no need to re-invent a method of studying quality of life in, say, diabetes if one has already been adequately established in hypertension. To paraphrase Gertrude Stein: “IQOL is IQOL is IQOL”. Thus we believe that all the methods described here are not merely general but also permit the study of true, individual quality of life to be approximated.

With these general considerations in mind, the plan of the book can now be set out as follows. There are three sections. The first establishes the principles that are relevant to the study of individual quality of life, the second describes a number of methods that have been developed for the purpose by others as well as by our own group, and the third describes some practical applications of individual measures. Three of the 16 chapters have been reprinted from recent publications, because their authors, who had been invited to contribute to the book, felt that what they had already recently said could not be improved upon at present (an opinion with which the editors wholeheartedly agree).

In Section I, Matti Hayry lays out the kind of questions that have to be answered, Monika Bullinger describes the relationship of aspects of cognitive psychological theory to the assessment of individual quality of life; Michael Hyland follows with a considered formulation of a programme for research in this field. Next Bech draws attention to some methodological pitfalls that may be overlooked in studies of this kind. Then Senn outlines statistical considerations associated with n-of-1 trials particularly relevant to research on individual quality of life. Crispin Jenkinson and Sue Ziebland conclude the section with a discussion on problems in the interpretation of numerical observations.

Section II describes a number of instruments for the assessment of individual quality of life: the McMaster approach to individualising questionnaires is described by Yves Lacasse, E Wong and Gordon Guyatt, followed by Andrew Garrett and Danny Ruta’s description of the Patient Generated Index. The Schedule for the Evaluation of Individual Quality of Life (SEIQoL) is described by Anne Hickey and her colleagues, and Robert Kaplan and his colleagues discuss so-called “preference” methods of assessing outcome. Finally, John Browne outlines briefly a number of other methods incorporating the individual perspective.

In Section III, Ann Bowling describes specific applications of the individual quality of life approach in population studies, Robert Coen writes about the assessment of quality of life by care-givers and the use of proxy judgements, and Dympna Waldron and Ciaran O’Boyle discuss quality of life in palliative care.

In Section IV, the editors offer the inevitable, but it is to be hoped, not cliché-ridden look towards the future, pointing out some deficiencies in current methods that need to be made good and possible extensions to other areas of interest, as well as frankly speculating about possible developments for individual quality of life research in the uncertain millennium to come.

The book concludes with an appendix by Sonja Hunt. This describes a kind of apotheosis, or apostasy, that has come to this leading contributor, originally, to the study of health status. Hunt now believes in the impossibility of studying quality of life although, paradoxically in its importance — not least because of the danger of its neglect in a world generally hostile towards the human right to a decent quality of life.

More than one investigator has been heard to utter an aphorism that is in danger of becoming a platitude: “I enjoyed an excellent quality of life until I began to study it !” The editors themselves will be content if the present volume helps to restore some of the pleasure to be found in such labours, rather than adding to the burden.

1 To make communication less clumsy, we use this apparently old-fashioned solution to what is in our view a non-problem. It has been sanctioned in the following terms by distinguished American authorities on style: "The use of he as a pronoun for nouns embracing both genders is a simple, practical convention rooted in the beginnings of the English language… It has no pejorative connotations." William Strunk and E. B. White. The Elements of Style. 3rd edn. New York: Macmillan, 1979. p. 60.

REFERENCES

la Bruyère, J. Les Charactères: de l’Homme. Paris, 1688–1694.

Bergner, M., Bobbitt, R.A., Carter, W. B. et al. (1981) The Sickness Impact Profile: development and final revision of a health status measure. Medical Care 19, 787–805.

Claxton, G. (1991) Psychosophy: are we ready for a science of self-knowledge? Psychologist, 249–252.

Croog, S. H., Levine, S. and Testa, M. (1986) The effects of antihypertensive therapy on the quality of life. New England Journal of Medicine 314, 1657–1664.

Drossman, D.A., Patrick, D. L., Mitchell, C. M., Murp, E.A., Zagomi, E. A. and Appelbaum, M. I. (1989) HRQOL in inflammatory bowel disease: functional status and patient worries and concerns. Digestive Diseases and Sciences 34, 1379–1386.

Editorial. (1991) Subjectivity in data analysis. Lancet 337, 401–402.

Hunt, S. M. and McKenna, S. P. (1991) The Nottingham Health Profile User’s Manual, revised. Manchester, England: Galen Research and Consultancy.

Joyce, C. R. B. (1987) Quality of life: the state of the art in clinical assessment. In Assher, A. W., Walker, S. R. (eds) Quality of Life: Assessment and Application. Lancaster: M.I.T. Press.

Meehl, P. (1973) Some methodological reflections on the methodological difficulties of psychoanalytical research. Psychological Issues 8, 104–117.

Meenan, R. F., Mason, J. H., Andersson, J. J. et al. (1992) AIMS2: the content and properties of a revised and expanded Arthritis Impact Measurement scales health status questionnaire. Arthritis and Rheumatism 35, 1–10.

Strunk, W. and White, E.B. (1979) The Elements of Style. New York: Macmillan.

Ware, J. E. and Sherbourne, C. D. (1992) The MOS 36-item short-form health survey (SF-36). Medical Care 30, 473–483.

2 MEASURING THE QUALITY OF LIFE: WHY, HOW AND WHAT?^*

MATTI HÄYRY

In this paper three questions concerning quality of life in ...

Table of contents

• Cover
• Halftitle
• Title
• Copyright
• Contents
• Foreword
• List of Contributors
• PART I. Conceptual and Methodological Principles
• PART II. Specific Approaches to Individual Quality of Life Assessment
• PART III. Applications of Individual Quality of Life Assessment
• PART IV. Future Directions
• Appendix. The Researcher’s Tale: A Story of Virtue Lost and Regained
• Index